Dealing With Dismissive Attitudes Toward Fibromyalgia & Chronic Fatigue Syndrome

“You don’t have to be like this. God will heal you if you just ask him to.” I realize that this is a personal answer from someone who has strong beliefs but so hard to believe from someone who is living with it.

People who believe in God have ME and Fibromyaglia too, and Cancer and many other illnesses! What a stupid thing to say.

Wow – you know, sometimes God heals people through their faith, but other times, he lets us deal with illnesses and trials because we are supposed to learn something from it. I have found that I am far more sensitive and empathetic towards others with illnesses, thanks to my own struggles. It is a curse but it can also be a blessing to have an illness. It is certainly not something that God will just take away for our asking.

I have had that experience from my parents. They repeatedly tell me that I should lose weight, eat better, take less meds and give it over to God (even though I am Pagan). They refuse to listen. Even when I do actually look sick they think the answer to me having better health lies in me not being lazy and trusting in God. If only it were so simple.

If only it were so simply!

I hear you. My mom is the same way. Just exercise, eat healthier, take vitamins, take less meds. Then, of course, I’ll be just fine. She just doesn’t GET it! I send her information. I’m achy all the time, some days are worse than others or in just pain. I’m sure you all know the drill.

When people are unthoughtful towards my conditions, I simply let it slide now. Its taken years to get to this place…but I know I won’t change their way of thinking with a sassy answer. And the relief sass would give me is so momentary…I find a kind word in the end makes up for all the negative they don’t even know they are sowing into the world around them.

When we loose things we have always depended on, like health, some of us finally realize we have to depend on Him for all things as we should have from the beginning. I’ve lived with FMS for over 15 years, I still struggle with God over the debilitating nature of it…But inspite of all the pain, exhaustion, lack of support, Somehow along the way I have found an enormous amount of Joy in life… ( though on really tough days I do seem to hide it under the mattress!)
There is no way I could have lived my life so far without God being my strength. If I had at any time thought ahead about succeeding in any area in which I’ve found success…I would say there is no way! But some how, a little at a time, trying to do what I can in the day I am in…God has done a lot of stuff in my life! As he has through many of you. The fact that you can write here your reply…shows me you have much to give: You empathize and sympathize, you encourage and guide…There is no bigger gift to give that these things! I appreciate every ones notes. Even when they may be far from my own ideas..they make me think, they make me do a heart check, they help me realize each time how different we all are and yet how bound together we are by the cords of our illnesses.

god will not heal you, i have a friend who like myself has fms and also epilepsy, she goes to church every week but despite all her prayers for both of us it has never done any good.

Here are some that have irked me.

From other lay persons: “God gives no burden too great to bear.”
“Everything happens for a reason.” “God’s grace is sufficient.”

From health care professionals: (A nurse) ” I’m tired too.” (A doctor) “You say you have fibromyalgia. Okay, we’ll put that down.” Then sarcastically, the doctor says as he writes, “Fi-bro-my-al-gia; there, I put it down!”

My faith has become much stronger since I began struggling with Fibro and CFS. I have prayed for healing, but more often I pray to accept my illness, to strengthen others who are struggling and to have goodness result.

Okay, for all the devout Christians, sorry in advance for my personal belief system.

I was a Christian all my life. Then came the fibromyalgia. Then I questioned religion of ALL kinds. I came to the conclusion that I am a humanist. SO, certain folks whose names I won’t mention, told me that God is punishing me with fibromyalgia because I don’t believe in him! HELLO!! I stopped believing AFTER I got fibromyalgia! I have been sick my entire life, one thing after another- and I believed in Him then!! and what business is it of yours anyway!

Sorry, had to get that off my chest. But that is the most insulting thing I have ever heard, said right to my face!

Shawna,I’m so sorry that anyone would say that to you….To be Christlike you have to follow Christ teachings and I know He would have never said that.He doesn’t punish people ….My God is a loving God .There has been times in my life where I have doubted Him and his existence..but until you ask Him and truly believe your worthy and your are to God ! He put people in my life to help and show me how much I’m loved and that I can’t love someone if I don’t love me.Yes life is still hard but today is easier because of the people in my life and God.When your ready he’ll be there.Be grateful..there’s always,always something to be grateful for.I hope you will try again to connect with your faith . Your friend in Christ

Shawna God is aroung just take a look and you will see him. Some people cannot see,talk or walk but still they have life. With FM is only a pain 24/7 sometimes it goes for a short time but still you smile. God takes what he want to take from us and leave us with all other stuff for us to praise him everyday. I was nine wheen i started to have 24′7 pain but look I’m 37 now still alive. Only few years ago accepted Jesus Christ as my saviour and i got inner peace. During this time i couldn’t walk, i was limping and i went to all the Dr’s i know. When i got saved things change but the pain is still here. i learn that nothing is impossible with him, i accepted my sickness and move on with my life. At some stage i use to think of taking my life cause nothing help me. He made me realize that i worth more than othe people think of me. He created me for a purpose not to die but to give life to others. i really appreciate this column.

Shawna,
I understand totally. I’m not christian but I believe in god. Because we are all gods. We have the control to create our reality. I don’t believe in pushing our problems onto someone else. That is not what is meant to happen.

I have found what helps my pain is to meditate. Get to know your subconscious. There you will meet your guides who can help you.

We are all part of the divine. We create the situations we are in and we can get out of them. It is difficult. Sometimes it may be what we wanted to experience while being human.

Meditate and get in touch with yourself first and foremost. Once done, you will see what I mean.

I went through 12 years of Catholic schools but I never believed in it. I have always had a “feeling” about a different belief system. I discovered that a few years back what it was and am so happy I did!

You need not make any excuse or say sorry for what you believe shawna. We should not take offense at the beliefs of others! We are called only to love and support and offer encouragement on sights such as this… but Nor should you be offended by others who share their beliefs with you. They stake their all on their beliefs, they share because they have found comfort in them, and want that comfort for you. don’t think of it as preaching…They are sharing..Now if some one tells you “turn from your wicked ways or burn!” well yes, that is preaching and has no place in this kind of conversation.

…or in any conversation that I know of!

@Yaya… When someone questions my beliefs I simply tell them, “some people God uses because he knows they are strong enough to endure. So I can reach a non believer who shares my illness and I understand what they are going through. However, someone who doesn’t understand them might not be able to reach out to them… I know some days it is had to fully understand why I have to go through this, but that one person who doesn’t know God but knows pain may see how God helps me. Through them seeing my strength coming from God, then that one person is so worth all the pain I have!” Now if they haven’t fallen asleep by then or try to argue… I simply walk away… The stress would just make me hurt more so why let them hurt me twice? People have said mean thing, even my family wonders if I am just lazy. I have explained what it feels like but they just don’t get it… I really would like to see some of these people spend just one day (During a bad flare up!) in my place.

What a lot of baloney. Wake up.

Angela – Right on! Praise The Lord … you said it better than I ever could! and I, too, wish that when I walked into a doctor’s office, he felt my pain (might get better diagnoses that way!)

To SHAWNA*****

Did you ever think that it was not God punishing you? I have Fibro-Diabetes-Neuropathy-IBS …and I feel that way sometimes…but If you are a christian, God won’t punish us like that…that’s why Jesus went to the cross. So we wouldn’t have to. God Loves us that much!!!! Satan wants you to turn away from God. Read the book of Job!
I think we are inconvienced with certain things to be able to relate to other people to try to help them through their illnesses. To be a blessing to them. So I don’t care how much resentment you have about the disease, you need to work out your own salvation. God loves you so much that he watched his son die on the cross for you….could you do that for someone you loved??? God Bless you and you are in my prayers.

Wendy – God bless you … I, too, have tons of medical problems that just started piling on when I turned 44 … up until then, I was in great shape … just wanted to tell everyone that may have started this plunge with insomnia to get a good sleep disorder doctor … I just found out I’ve had it for years … 80 events every night (heart stops) … so, you start with hypertension (high blood pressure), chronic pain, chronic fatigue, fibromyalgia, 3 spine surgeries, gallbladder removed, diabetes … I’m told some of this can be reversed (at least the high blood pressure) … I pray that some of you will seek a good sleep center … especially if you snore, snort, wake up catching your breath, or just don’t EVER feel refreshed from a good night’s sleep (I know this symptom overlaps) … first night at sleep center with auto pap machine, first time in 5 years, LESS pain upon awakening and a little refreshed

Most people understand the pain rateing chart by now 1-10 and I find it easier to respond to? about how I am feeling that day with a number. They usally say wow really and I respond yes really. But the ones who don’t want to understand never will so I do not waste what ever little energy I have that day on explaining to people who won’t listen.

Robyn – Even my “good-hearted” pain management doctor said only “cancer” patients have pain of 8 or 9 or 10! My Mom told him she had cancer and never had the pain all of us suffer through!

Wow Shawna, I can’t believe someone actually said that to you. I am so sorry. I understand that you have made the choice you have about God. I chose to still believe in God, I really like what Angela has to say about it. I’ve gone through many struggles in life as well as Fibro, many of them could have caused me to just give up, I’ve wanted to many times but always in the back of my head two things have spoken to me, God won’t give me more than I can handle and my family needs me. Now it isn’t easy, and I can’t say my family truly understands. I am so frustrated with my Doctor’s who can’t seem to even 50% figure out how to control my pain, my co-workers, especially my boss, who don’t or won’t understand that I work with pain everyday and have a fit that I have Dr appts and I am sure going to use the “Are you too lazy…..” statement. Anyway, my point is, never give up, we need to always look for ways to get better, educate, and be compassionate to others even if they aren’t to us. Peace and harmony.

Now I have been insulted again. I already said I have my own belief system. I am a humanist. I did not write to be preached to. If you read my post, you should understand that being preached to is INSULTING to me!

Adrienne, maybe you should just delete my posts because I guess I wasn’t clear.
Thanx.

I thought that your comment was very relative. I have heard of God punishing people with various diseases or hurricanes, etc. I’ve also heard “what did you do to deserve this?”. My dad used to believe that all disease was because of unconfessed sin in your life. That caused me a lot of anger for a while. I don’t think that’s how God works. Anyway, I hope you won’t remove your comment because despite the fact that people are still preaching at you, it may still open up good conversation. And people who read the comments may not understand what is going on if your statement disappears. I appreciate what you said. And, hey, you did give a warning before you started

Shawna, I hope you didn’t take what I said as an attack on you because it was not meant to be an attack. I meant to say that I was in disbelief that someone would say that to you and that I understand that you would come to your decision. I am not about trying to change anyone’s decision’s about religion or any other choices they make so if you were referring to me I apologize.

I do believe in God but I am not affiliated with any certain “denomination”, I don’t attend church due to problems stemming back years ago and things I find “hypocriical” in some churchs.

I do believe that people that have had these illnesses, I also have OA, IBS, PCOS, MDD, ADD, GAD, etc, etc. are able to be compassionate and understanding to others, sometimes more than people who have not dealt with illness.

On the other hand, on bad days we may tend to lash out at others. I don’t believe we should push our belief systems on anyone, only to share what we have been through.

Peace and harmony and hopefully some pain relief, oh and the Cymbalta commercial, nope didn’t work, Savella, nope, Lyria, on it but doesn’t do much, so I dislike those commercials as well.

Shawna, I respect your decisions and beliefs, however becoming ill with fibromyalgia is a blessing in many ways Why? Because we don’t have MS, breast cancer, or any other cancer for that matter. We don’t have a brain tumor growing our heads.

If I had a choice between all these, I would pick fibromyalgia hands down. And this is not a punishment. It is just a part of our destiny. How we chose to deal with it is the important part. How we support each other, and manage this illness is what matters.

We live in pain everyday, but we can never lose hope. Without faith, than hope is all there is.

Best of luck

Tisha – How beautifully said … I’ve always loved “there but by the grace of God go I” … God bless u

love the comment about the diabetic…! My other big beef is people see the cymbalta commercial and say “well isn’t there a pill for that now?” yeah, i tried it, i was so violently ill after taking it, i will never do that again!

Sharon, I totally understand the cymbalta issues. I was sick every day. I had to wean myself off them and even that was horrilble!
I just quit my job as photographer 35 minutes ago. I worked for a car dealership that has 3 different locations within a 3 mile radius. I worked very hard, rain or shine. Even in 20 degree weather. No one seemed to understand the amount of discomfort I was in. My doctors visits, insurance, and prescriptions cost more than I was making. I don’t know how many times I tried to explain my symptoms to these people, and the response was,”But you are always smiling.” So today I was fed up!!! I just wanted help or a raise if I was going to kill myself every day. So I placed all my pills ( 6 different Rx) on the managers desk and said,”These are why I can’t keep hurting myself for $8/hour!” ***And to think I only took the job so I wasn’t just sitting at home thinking about how helpless I feel.

Andrea, your comments sounded so much like me, right up to the “fed up”. I never had the courage to do that. I’m so proud of you & think we could be great friends. when I’ve missed many things because of fibro & finally have the energy to go to something, I always get the you look good stuff. I don’t bother to go into how much med I’ve taken, how much rest it took to get me there & how I will crash for an unknown length of time when I get home. Unless a person is living w/this, there really isn’t anyway to explain it & I’m too tired to try any more. How abt the woman complaining abt her daughter having all kinds of problems w/ fibro, & her own dr. saying fibro wasn’t real. I said “you need to find a better dr.”. She was so busy telling me abt the fibro sham she couldn’t hear me. whatever

Sharon,
I probably have this kind of response every week form someone…about cymbalta…lyrica…or other super expensive vitamin coctails from the “home sales” ladies. I also have it from folks that take them and “it changed my life”. Well non of them did a thing for me…thats the whole thing about these illnesses, they never respond equally to different people.

In reference to the previous comments, I’d like to say I believe no matter what “belief” system one has, people likely have formed an opinion within the first few minutes of knowing your plight. They can be the most devout Christian or the most Atheistic person, if they don’t believe you’re really sick, they’re going to convey that in attitude / words.

I’ve recently encountered this with a close relative who was comparing me to another relative who also has FM. “Well, so & so isn’t down in bed like you are. You’re much younger, this should be able to deal with this easier!”. This conversation actually caused a bit of a family feud for a short time. It was all “talked out” in the end, but feelings were still hurt & things said that won’t soon be forgotten.

I am to the point of not bringing up FM if not necessary, because I have run out of patience & trying to educate people. I know I sound very cynacle, but I’m also experiencing fresh wounds. I appreciate this forum as I can speak freely & with those that truly understand!

How about: “At least you don’t have Cancer!”

Well, No, I don’t want cancer. But I have constant pain. I have an illness that [at times] I wish I were dead so I didn’t have to endure…but am not. I want something that a medication will alleviate. I would even go thru Chemo, if that was a fix. But it isn’t. I have tried numerous things, each of which did not help me.

And no, at least I don’t have Cancer, But at least I am not Ignorant.

Re: “at least you don’t have cancer”
NOT that I rather would have cancer, but if I did, I would at least I get medical treatment AND people wouldn’t question if I really were ill

If it helps, you could also tell them that from at least one person who had CFS and then cancer, I was actually, in all truth, rather relieved to get a cancer diagnosis (as a believer in the after-life, I am not afraid of death itself–pain and suffering is a different story) because the doubts from others, and even myself were really overbearing. That being said, if I knew how much chemo and to a lesser degree the radiation would pile on the fatigue, I probably would reconsider that, but that has nothing to do with the cancer itself or even the admittedly painful treatments (the immune boosters were the really painful part for me–not so much the actual treatments–those just zapped energy, and how).

Now that I am cancer-free, there’s not the easy sympathy anymore, unless I happen to throw the “cancer bomb” in describing this part of my history to someone. But it is really stupid because CFS is the real nasty enemy to me (and it would seem to me, the likely cause of the cancer itself), but were I to argue that, people would probably still think I was trying to garner sympathy given that I still have CFS.

I can relate to what you are saying here. I did have cancer and this is worse. Some days I wish I could die so it would end too.

Re: How about: “At least you don’t have Cancer!

No one’s ever been that rude to me, but I’m ready:

No, if I had cancer, I’d have friends bringing me casseroles, doing my laundry, running errands, and, best of all, I might get to die.

I have actually been envious of others illnesses! Oh yea! I admit it…If I had cancer then their would be a treatment, there could also be either healing or an end. Yep…you know it…you’ve all desired death at some point in your suffering! I laugh at myself…If they only knew. I’ve heard those same words…”well at least its not fatal!” What if I told them the truth that many days I wish it were? I look upon people that are wheelchair bound and often envy them.!!!..yep, its true…its obvious to all they need it…I wish I could just let myself give up walking and zoom around on an electric scooter…but alas…I know I’ll just make my symptoms worse. I think we all have those days don’t we? Luckily at this point I still have more days that I have much more hope than that, much more joy, much more trust.

I have fibromyalgia/chronic fatigue and bipolar disorder. I embrace these as challenges to bring me to a higher level on my spiritual journey. Spiritual meaning I believe in God, but am not of an organized religion. I embrace the all of which I experience with a positive attitude. I do the best with what I have to work with. At the present moment, I am homebound. I have focused my energy into network marketing, which has led me to a new career, since I can no longer work a conventional job. I hope this inspires all who have fibromyalgia/chronice fatigue to step up and ask yourself, “Is what I am thinking harmful or helpful”? This will help you in every day of your life.

I am a Christian. The following are my personal beliefs. I have Fibromyalgia. I have a couple of acquaintances and a couple of good friends that are sure that God will heal me, as the first person commented. It makes me uncomfortable when I get those kind of comments. Here is what I believe. When sin came into the world, disease and death came with it. Can God heal me? Yes. Will He? If I look at history, then the answer statistically would be a no. If He heals everything what would be the point of Christ? Is my Fibro a punishment? NO! That’s like saying that my cold from last week was punishment for not washing my hands. The Bible talks about rejoicing in our pain and trials. Our suffering is only for this earth. When I die and go to heaven, that is when I will be healed. For the second commentor, Shawna, I’m sorry that person said those things to you. They were said out of ignorance and they obviously don’t have the gift of compassion.

My suggestion for when people say these things about being healed. Say “Oh, please pray for that.” Give them a big hug and as you end the hug have your hands on their shoulders. Straighten your arms out to full length. While stepping to the side, arms still out and hands on their shoulders, say “Thank you so much.” And start walking away. Your hug and arms have forced them into a position of you ending the conversation and moving on to the next person at the party, back to work, whatever situation you are in. But you were nice. You put the responsibility back on them to pray for you. You didn’t argue and you were polite. If God doesn’t heal you, then it’s their fault for not praying enough. Or that’s how they will feel. They probably will not bring it up again.

Thisismyfibro – Wonderfully said … I believe as you do … I just tell them I’m in too much pain for a HUG!

Yes, I understand. A lot of people use the salutation “gentle hugs”. I know that is sweet, but it drives me nuts. I don’t want a gentle hug. I want a gigantic bear hug that does not hurt!! (Big sigh) But until then, it is nice that people are willing to be gentle.

Thisismyfibro – I really like your method of dealing with the “God will heal you” attitude. Its probably the easiest way to get out of the situtation without having a arguement

Since, I look at CFS as an autoimmune/neuroimmune disease, I try to explain to people that I am not sick in the conventional way that people think of illness. That my body is actually over-performing which can make you feel just as bad as one that is under-performing. Is it an infection or a reaction? Is it is an infection that your body can’t defeat and you become weak and frail, or is your body over-reacting to everything; sending out an immune response that is too strong causing inflammation, irritable bowel, pain, flu-like symptoms etc.? A strong immune response can make you feel just as bad as a weak immune response; they are totally opposite problems, but produce the same symptoms. People who are experiencing an over-response of the immune system feel just as sick (eg autoimmune diseases, allergies/anaphylaxis), but don’t look as sick because their problem is not caused by a suppressed immune system (eg cancer, diabetes), but one that is over-performing.

I take this approach too – I have fibro and psoriatic arthritis, which is an immune system disorder. I explain that my own immune system is attacking my joints & my skin (PsA). I also explain that fibro is the brain interpreting pain at a much higher threshold. So what might feel like a bump to a normal person would feel like a hard punch to me. This seems to help them understand. It is more concrete somehow than them just hearing, “I’m tired all the time” or “I hurt all the time” – making it sound more clinical and scientific has been useful to me in helping people understand.

It’s tough when your own PCP looks at you like, you look okay to me. I would not leave my home to go to a doctor’s office if I were not in pain 24/7. I have worries about what is happening to my body as a result of all these medications I take on a daily basis. I hate the, “How are you today”, from my doctor, I’m the same as I’ve been for the past ten years suffering from pain that is only being controlled by the medications that I am being prescribed. It feels like it would be a punishment from God and that this is something from Satan. Truth be told, Fibromyalgia has gotten me closer to a faith in God and I study every Sabbath online, which makes me feel better for a good period of time, I watch each Saturday to help me cope with what is going on with my body being racked with pain. @ThisismyFibro, I really enjoyed your comments.

I sit here and read some things that people say and that reminds me everyday that I’m not imagining these things that are going on with me. Some days I ask myself if I’m imagining the pain, if it’s all in my head and I’m really not going through this. For some reason each day is a new realization that this is really happening to me, that this is really something that is happening to me. I don’t know where the past 4-5 years of my life has gone. I can’t remember the exact time frame when I was diagnosed with Fibro was. I know that I was diagnosed with Lupus recently within the past 6-8 months and Sjorgens. I also have Hoshimotos Thyroiditis, IBS, 4 Herniated disks, Osteoarthritis, Gerd, Thoractic Outlet Syndrome, Degenerative Disk Disease, Anxiety, Depression, Sleep Apnea, CFS, Alpha Intrusion, and a few other things too. I can’t remember them all and have to look at a list every time I’m asked what is wrong with me so that I can keep up with is wrong with me. I’m only 34 and use a walker and cane and if you were to read my. I can’t go out into the sun without blistering or breaking out in some off the wall rash or over heating. Oh and the migraines. I’m exhausted all the time, my body feels like it’s being weighted down by a ton of bricks. The pain hurts so much, wearing clothes hurts, taking showers kills me. What kind of life is this to live? I’m sorry to complain. I normally keep my complaints to myself because complaining doesn’t get me anywhere in life. So I go to places like this and very seldom, but at times I leave comments and let it all out. I think that the world should become more educated on these health issue’s and more aware that they are debilitating. I have been trying for disability for 4 years and still fighting. They say I’m disabled, but don’t meat the book requirements. So what does that mean? I’m disabled, but you don’t want to pay me the money that I’ve paid y’all for how many years? Thanks for listening.

Don’t give up on disability, Just Me. Hire a firm to represent you. I used Allsup. They did all of the work for me. I was so exhausted, so distraught, after the first denial that I wanted to crawl in a hole and die. Then I heard about Allsup from one of the forums I visit….I called them and about 18 months later, I was awarded total permanent disability. Hope this helps you.

Getting it all off your chest once in a while is kind of cleansing isn’t it? I think it’s actually an important survival skill I think. In the Bible there is a whole book dedicated to it! And David in the psalms usually purged it all out before God…don’t feel bad about it…

don’t feel bad about it…feel a bit freed by it instead! It really worries me that you have had to fight for Disability. There are thousands on it that shouldn’t be…but they have learned to work the system. You have neither the health or energy to take on this fight…its just not right. Google lawyers or support groups( of your conditions) in your area to see if there are those who will help you with this…Find out what is the right “book” requirements and see if your doctor can reword what you have to fit them. I’m not talking about lying…But there are certain expressions and erminologies that when used, are the ones that get you the disability help you need! Its ridiculous. But if your doctor doesn’t use the “magic words” you may be denied. Hang in there!

I’ve never really been INSULTED but a few family members have made comments referencing laziness. My kids seem to think I’m lazy more than anyone else, and they also expect me to run around behind them and clean up after them. They just flat refuse to help around the house(not looking for advise or criticism here thanks.) but one thing that did strike me was my granny and grandad. My granny has FMS/CFS(we have 3 generations with FMS) and she was comparing herself to me when grandad was complaining about something, when grandad pops off “But Freedom has fibroMYalgia!!! so she has a reason” Granny was floored that he acknowledges my FMS but not hers. Neither of us can really figure out why that is either. Anyway, so far I’ve been fairly lucky to have friend that understand and dont judge, it seems that family is the worst though, I’ve had to tell my own Dad like 10 times that I have it and he still doesnt even understand what it is. every time I tell him I have it, I have to explain what it is AGAIN.

Is your name really Freedom? I have a 30 year old Son named Freedom.

I have Fibro and MS so this article made my day. Because I get comments from many people about both illnesses. I am in pain and tired a lot. I really hate when someone tells me all everyone gets tired. I would trade their tiredness for mine anyday.

I hear all of you. I have Bipolar disorder, Oteoarthritis, and was diagnosed with FM last Dec. after a traumatic surgery on my hand that has never been right since. I am a Christian, and people don’t realize all my life I have had to struggle through many hardships,mental, emotional,and physical. Now I am no longer to do the job I had for 33 yrs(hairstylist) and learning to accept the fact that who I was 2 yrs ago died. I need to learn how to get through one day at a time, one hour, one minute some days. I know God doesn’t give you more than you can handle, but I feel like some of my friend/family members may have “a” hardship or two in their life, but for the most part they have had it pretty good in comparison. I feel like I no sooner get one and try to accept what is happening, and boom another stikes me. They have pulled away from me and that hurts my feeling. My daughter even called me recently and said “you are alway down and after some time it gets old”.
Really?? you think?? I dont need anyone making me feel worse than I already do. My own kid doesn’t even get it. I believe I have this because I spent my whole life taking care of everyone but myself. Now I am alone and nobody cares. Or they think I am fine because I look fine. Do I have to go out in public in my pajamas for people to see I am suffering? I try not to dwell on my situation but some days it is hard to say “I’m great”.. when in fact I am not. My doctor is even running out of ideas to try.. I was on amyltriptaline,cymbalta, and had allergic reactions. Now I am on Lyrica and it does not seem to help much but attitude is everything.Mine unfortunately has’nt been very good… sorry. I am trying.. really.
I know I need to welcome my “new” self and learn how to cope without turning everyone around me OFF. Not an easy fight.. and Lord, I am tired. I just want to feel good and be happy. God Bless you all and gentle hugs..

In a ironic kind of way, people with CFS and fibromyalgia are actually too healthy. That is why they don’t look sick. Their immune systems just don’t know when to quit.

People are genetically predisposed to being 1) immune suppressed (prone to viruses/infections, cancer, diabetes, HIV); 2) somewhere in the middle; or 3) have a hyper-reactive immune response (autoimmune diseases like RA, lupus, Guillain-Barre syndrome, CFS, fibromyalgia). When they finally get this all figured out and stop treating everyone like they are all “immune-suppressed” carbon copies of each other, they will be on their way to finding a cure for CFS and fibromyalgia.

I’ve been sick with FM/CFS for 4.5yrs now. There have always been inuendos made, but up until last month, nothing directly.
For the last couple of years, I’ve been able to function to a certain extent. I was given tickets to see a popular comedian at our local sporting event pavilion by a friend. Several other members of her family were also attending and we all drove together. I brought my handicap parking placard because I didn’t want to waste the small amount of energy I had on walking a mile just to get to the venue when I knew that once inside, I would have plenty of walking to do. The brother-in-law of my friend saw my placard and asked how I came to be in posession of it. I told him that it was mine. He then asked, “Why? What’s wrong with you?”. I told him why and his response was, “Well, your legs seemed to be working fine when we all got in the car.”. His wife was mortified, as was my friend. I typically have a pretty short fuse, but because the evening was just starting and I knew I’d have to be around this bonehead for the rest of the night, I just kept my mouth shut.

Zena, try reading “How To Be Sick” by Toni Bernhard. It’s an amazing book for helping with your feelings. It is “Buddhist-inspired” but does not promote Buddhism as a religion. We got stuck on the religious topic. The post was about people’s crappy attitudes about our illness. Go figure. Anyhow the comment about being to lazy to keep up with the research might feel good at the moment but I imagine you’d only use it if you were done with that particular medical practitioner. Their egos can’t handle that kind of confrontation. But it sure would be fun to say!

I am in the middle of an extremely bad flare up, & I sit here & cry when I read all these comments. I know what it feels like to experience all these comments & reactions, & I know there is no answer. I’m lying in bed right now & I’m too exhausted to get up to find something to eat, so I sit here in pain, & I’m hungry. I don’t believe God is punishing me…I just think I’m sick. I’m just sitting here praying that these really bad times will get done, so I can at least get out of bed.

all I have to say as a fibromyalgia suffer’er is…………… yes it hurts daily, yes it restricts us physically lots, depending on our level of illness, Im in a wheelchair right now due to it and a few other complications, however, life is what you make it, I hold down a full time job, and with support from my workplace that isnt a biggy, the one major factor to remember is use it or loose it, too often its too easy to say I cant do that, if you believe you cant you wont be able to, my train of thought in all of my life is ‘ I can do it’ and go for it, and when others look oddly at me cos I dont do it quite like them, their problem not mine, im still enjoying my life to the max …. and to yaya, get real, god wont heal us, our positive thinking helps us move on and upwards.

I have learned that someone is always going to talk about me, or dog me. It used to bother me, But I know at least in this present moment that I cannot do what I used to do and I AM NOT my body. So if someone wants to put me down, so be it! Let them live in their egotistical state of being. I am only responsible for my actions and behaviors. I choose not to listen to them or even remain in their presence. That is why I look at my health issues as gifts. Gifts to empower me to a higher level in my personal growth process.

You know how a lot of people say they wouldn’t wish FMS/CFS/ME on their worse enemy…or even the rudest medical practitioner? Hmmm…

Check out this post on “being forced to rethink my views on fibromyalgia” from a nurse: http://allnurses.com/general-nursing-discussion/being-forced-rethink-529067.html

If your friends and family are willing to watch a video, send them to see The Spoon Theory. It helps describe what it’s like to have a chronic illness. She’s talking about lupus, but it still applies to anyone who is not healthy. Here’s the link:
http://www.youtube.com/cmiser1

‘Pray for me’ … LOVE IT!!

Someone mentioned leaving the house in pajamas to show how they really feel sometimes… I started driving my kids to school in big eskimo slippers, with my red housecoat peeking out from under my coat. It forces me to avoid social contact at a time when I can’t handle it.

But that is a little drastic. When I’m going somewhere but I know I can only be ‘halfway there’, I go with a smile but without makeup. (And nothing reminds people how bad I feel then my raggedy eyebrows when I haven’t penciled them back in!)

Don’t dog on the doctors though. I had a great family dr, open to alternatives, very caring and attentive. She told me she comes home after 7 every night, and after she tucks her kids in bed (not long after that), she has to fly thru alerts and updates about meds and so forth for at least an hour – every night! She told me she’d love to learn more about vitamins and herbs and natural therapies but she just doesn’t have time!!

And then my new dr here, who’s a naturopath, seemed to reject the whole idea recently, told me he ‘doesn’t actually believe in FM’ – I was floored! Here’s a man who’s helped me so much, I’ve often felt like hugging him and thanking him tearfully. And he’s a naturopath/ homeopath/ nutrionalist/ herbalist, besides being a wonderful family dr – how could he say that?!

Well I didn’t go off on him, I have way too much respect for him to do that. And by the end of the (1 1/2 hr) visit, I realized what he meant. For him, FM is just a label people are given, and often that’s the end of it, then most drs give up.

But he sees more than FM, he sees first a person, then their particular individual everchanging problems, the life they lead, the baggage they carry – and that’s when he gets down to work! He fixes what he can fix (like low D3 or thyroid, etc), he never stops ‘tracking down new leads’ and educating himself, and he tries to help the person cope with the rest.

The male PA at my pain doctor’s office said to me, “When you wake up and first put your feet on the floor and it feels like broken glass when you walk (neuropathy), think “LOVE” and think of me and you will be fine.” He said, I am the LOVE doctor.” And all this in front of my ultra conservative daughter. I was pissed, stood up and yelled, “You mean to tell me the sign on the front office door should read, “Love Doctor instead of Pain Doctor??” One of the nurses stepped in, and that was it. I switched from that mousy ignoramus to the girl assistant. The problem is, that if you find a doctor you love (lol) it is very rare. So I didn’t change doctors, and thank goodness because I got my disability.
Girls…..DON’T TAKE CRAP FROM ANYONE, ESPECIALLY HEALTH CARE PROVIDERS. TAKE BACK YOUR POWER.

To all the religious folk out there, it’s nice that you believe God is giving you inspiration to deal with your illness. Know too, though, that there are others who do not believe in any special God who find inspiration to make it through their days with love and compassion, also. You attribute it to God, I attribute it to my humanity, others may attribute their getting-through-it-all strategies and attitudes to something else entirely.

Believe in God or gods does not give one a corner on the ability to make it through this illness.

I think it’s all about ‘picking your battles’. Don’t waste your precious energy on people who don’t matter or who can’t possibly understand. Show yourSELF respect by keeping your dignity, hold your head high, smile if you can and set the example so that one day, when they go thru something bad, they’ll remember us and be inspired. And think about it, really – would any of us REALLY understand this if we weren’t going thru it too right now? HONESTLY??

We all need to work daily on a zen attitude and a great sense of humor! I know we often think anger will build in us if we don’t throw it back at people. But I’ve learned that it’s the opposite, it’s like a landmine that blows up between you, everybody gets hurt and it never ends.

What always, always releases negative emotions from me is to do good, some little something positive. It can’t always be to the person who hurt me, and it can’t always be on that day. But as soon as I get the chance, I try to find some way to do something good for someone or something else. And it comes back to me afterward, again and again…

“Do not be owing anybody a single thing, except to love one another, for he that loves his fellowman has fulfilled the law… whatever other commandment there is, is summed up in this word… Love your neighbor as yourself.”

(gotta admit, there’s some pretty good stuff in there…)

where in the world did we get off from talking about fibromyalgia and living with it to who’s christian and who is not? This is a real thing. Do you christians out there think that a child with cancer is being punished? No…they arent’ neither is someone who has fibomyalgia. People don’t uncerstand it, because they don’t want to know about it. They may have it just coming on and don’t know it…then what would they say?

I don’t think this has turned into a religious debate. We (being Christians) are not saying that Fibromyalgia is not a real thing, since probably, most of us have it too.
The original question was:
“Have you come up with a way to deflect those unwelcome comments? What stupid, insulting things have people said to you? Have you thought of the perfect response too late to use it?”
Well, I live in the South. Good ‘ole, Bible thumpin’. God’s country, right? So 90% of the unwelcome, stupid, insulting things that people say to me are:
“Well you just need to pray about it.
Maybe we should lay hands on you.
Have you been anointed?
I know a group that does healings.
You must have some unconfessed sin in your life.
You must just not be livin’ right.
God would heal you if you really wanted it.
God would heal you if you had enough faith.
Are you tithing?”
COME ON!!!!
Then, if I”m not interested in all of those suggestions it’s like:
“Well, don’t you want to be healed?”

So what to you may sound here like a religious conversation, is representing for others of us a daily battle against people who don’t not only want to understand Fibromyalgia, but ANY medical condition. I’ve found that people in their 30’s and younger are more receptive, but not all! But it’s like the people older than that don’t believe in medicine. They think you have to choose between religion and medicine.

I do not believe that the first comment from Yaya was meant to start a religious debate. She was answering the question about what do people say to you and how does it make you feel. She was SPOT ON in answering the question.

You sound very angry and I’m sorry that you are hurting emotionally as well as physically. Fibromyalgia sucks, that is one thing I think we can all agree on!

Hi Everyone,
I’ve been sick with Chronic Fatigue Syndrome for almost 25 years now. I’ve suffered through the not so subtle disbelief (a psychic rolling of the eyes) and I prefer someone to tell me directly what they think than the discomfort of feeling that I’m being shined on but they really think I’m a malingerer or crazy.

But I’ve discover the doubt that is most destructive to me is when I’ve had self-doubt. Maybe I could do more or maybe I’m sick to avoid my responsibilities etc. I no longer second guess myself like that any more because I know that I am physically sick with a real, biological disease for which there is currently no cure.

Issues with others dissolve when I trust myself. It helps that I don’t believe in a G-d that punishes people by making them sick. I find it amusing that Christians who believe in a loving G-d would think that but that line of thinking blames the victim as do many other positive thinking philosophies.

Someone once made a comment about how well I looked when I attended a religious service which I am only able to do rarely. They ask my husband about it and he simply said that I wouldn’t be there if I were sick that night. The person got it!
The reason I’m not there often is because I’m home sick.

So my suggestion to myself is to trust my own reality, not be concerned about those who don’t understand and be the protagonist of my own life. This allows me to be happy despite my very limited lifestyle. Love to all, Esther

I refer religious people to the Book of Job or at least its Wikipedia article, since they may be open to correction where they see precedent in scriptures; I refer scientifically inclined people to Wikipedia, the CDC position (not the cognitive-behavioral bias, mind you, but at least their recognition), the XMRV and spinal fluid reports possibly, or Dr. Klimas’ strong advocacy in the NYT article, and emotional people to the Spoon theory.

Then again, I’m frankly getting tired of defending it and am really just eager for more results from real (biologically-based) research.

I don’t know if I am the only one, but I sometimes feel like a fawn, gazelle, etc. being eaten by the likes of a lion. In the videos of predation, while of course they are suffering, in the end, when they have no energy left, they almost just seem resigned that it is over for them and let the vicious circumstances pass over them. The cruelty and insensitivity of those who dismiss our fatigue cannot easily be fought by those who are already severely injured and in their clutches. While I may sometimes try to lunge for freedom, I think I have reached the stages where I am only able to do so with half-hearted flops.

That being said, I am serene in my confidence that it will be remedied in time, possibly do I dare imagine, even for myself, even while anxious to contribute in some way to help those in a position to do so to make it happen faster or at least prevent this somehow from afflicting others. Striving to make my own life more productive, and prayer during the times when the longing cannot be sublimated, are the best ways I’ve found to cope and move on, since tackling the problem head-on (like getting involved with advocacy) is for me too demanding, with my lack of the (figurative if not literal) adrenaline to do so and also strongly unpleasant in forcing me to dwell more than needed on the condition. Pining here occasionally, on the other hand, is of no difficulty.

My family does not understand fibromyalgia and I don’t believe any of them have attempted to educate themselves about the condition. My father has said (more than once), “You still have that?”

Fortunately, I suppose, my children are adults and I’m divorced, so I live alone and ~ for the most part ~ no longer feel the need to explain myself to people (my family included). I’ve told them there’s lots of material online and I can recommend resources if they’re curious ~ but no one has asked specifically for those resources.

I pray every night that I learn what I am supposed to learn from this suffering. I don’t want to be angry or bitter or resentful ~ I want to find some peace. It’s hard, every day it’s hard. But I try not to think about certain things ~ it’s the only way I can stay sane.

Hi Margie,

How long have you been sick? I think it’s great that you don’t want to become bitter or resentful and I learned the hard way that it doesn’t help anyway. After many years of self-pity I learned that that is a worse disease than CFS. It didn’t change anything and made me miserable and miserable to be around too. I also fully explored the resentment path, blaming my husband for pushing for a third child after I got sick when my 3rd child was 8 months old. I blamed G-d for making me sick and not healing me. Myself for not coping better. No matter which choice of tantrum I tried, it didn’t help and made things worse. It’s taken many painful years to simply accept the reality that I’m sick and there is no cure right now or perhaps ever. This is what has brought me peace–when I stay in that acceptance and make the best of what I can do. I’m happiest when I think of others instead of myself.

Does this mean I no longer cry from frustration, become irritable, feel jealous about people who are well and can function, feel lonely in my isolation, resent being sick. Hell no.
But I have times of peace and serenity too. And I’m better at getting myself to that acceptance more easily and often.

You don’t have to live in bitterness and resentment. You can live in compassion for yourself and others. I really think it’s a choice we have to make. I hope you don’t take as long as I did to make it. All my best, Esther

I hear anger in a lot of the comments, and defensiveness. Perhaps it is because I haven’t encountered the disbelief about my illness that many have, but when I find an opportunity to share a little about what FM has changed in my life I want to use that opportunity rather than give a defensive response. It is a challenge! When we are out at the store or an event, we can look quite healthy; it’s not strange for folks who don’t know to assume we are healthy.

I have never responded to these comments before, but just want to share a little of my experience of the past 5 years. It is helpful to hear that others can be as frustrated, confused and full of self doubt as I am. I have found some relief thru the Fibromyalgia and Fatigue Centers (about 15 centers around the country – very expensive) but am now looking for something more comprehensive and with greater attention to hormonal imbalance. This involves a very holistic approach which I am open to. I am trying Functional/Integrative medicine next, so we shall see. As far as making it day to day, I have found that the idea of acceptance is very important. This doesn’t mean giving up but accepting that the circumstances of your life are there for a reason. I came into this life to learn a variety of lessons. For me, part of that is dealing with chronic illness. I try to do so with as much grace as I can. Of course I don’t always make that mark, and then I just try to pull myself back to a place of peace. I am not be able to achieve the goals I have for myself, look the way I would like to, or do some of the things I love, so I try to focus on the things I can control, like nurturing positive relationships and doing things that are quieter in nature. Probably would not have focused on these things if I had not gotten sick. I am not saying I love where I am (most days I hate it), but I have this thing and until miracles happen, this is the life I must lead. All in all, I am still thankful for the journey.

I saw this t-shirt slogan once (it must have been on http://www.butyoudontlooksick.com)

On the front:
“But you don´t look sick”

On the back:
“But you don´t look stupid”.

Brilliant, that.

I have a whole host of chronic crap, the most severe of which right now is Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome) and Syncope. If you are interested in those, I have a lot of info at my blog http://potsville.wordpress.com

Here are some of my snarky thoughts…

BYDLS: No, I sure don’t look sick, but you don’t look that dumb, either!

People who give medical advice: Oh, did YOU get your medical degree out of the cracker jacks box, too? So did I! What a cool coincidence!

People who don’t det exercise intolerance: You don’t have any allergies, do you? (yeah, peanuts –or whatever) Well you should eat at least a half a pound a day. If you eat enough of them, your allergy will magically vanish, didn’t you know that?

People who don’t det exercise intolerance #2: Your husband/mom/dad/whoever is diabetic, right? S/he REALLY should eat several doughnuts a day. I read that giving the body more sugar will increase its tolerance for it (wink wink).

People can be so STOOO pid! I do not understand why people don’t get things like exercise intolerance. I have it severely, too…POTS is horrible for that (but you already know that, Pris…saying so for others). I can get away with it in the pool because the hydrostatic pressure helps keep the blood from pooling and it cools me down, but I still have to ‘recover’ after. With POTS, you *are* supposed to exercise, but only when your symptoms are under reasonable control, and very carefully, because doing even a little too much can make you sicker for a long time, just like with CFS/ME. I think it is impossible to have severe POTS without also having CFS.

And people with their crazy diets and vitamins etc…lordy! Sometimes things like that can *help* but they don’t *fix*.

Six months ago I tested positive for the Epstein-Barr Virus. Since then I have seen numerous specialists and so far all the test results have been normal. In the mean time the fatigue, headaches, etc continue. I have not officially been diagnosed with CFS. How many more tests do I need to go through before the doctors diagnos what I believe is CFS. Also I have been unable to work since August. I have a government job and have to keep fighting to continue my disability leave. Im unable to work but all the doctors reports going to my employer are showing my tests are coming back normal. Im at a loss as to what to do now.

Find a new doctor. I had a specialist tell me years ago that he did not believe in Fibromyalgia. Called it a diagnosis given when they don’t know what it is. It takes a lot of years and many doctors sometimes to get a diagnosis of FM… I’m not sure if it’s the same for CFS. Maybe it is. I hope you find relief soon and get some medical reports that substantiate your disability to your agency. Good luck.

Just got diagnosed (finally!) today. Just yesterday, during one of my breakdowns of utter desperation, someone very close said:’Well, you got to realize that maybe, this is all in your head”. A few minutes later, the same person said “well, you know that my mom hurts really bad all the time (said lady has rheumatoid arthritis and osteoarthritis), and she never stops. She is a real energizer bunny, and she does have a reason to hurt”,
Ha! I sarted laughing so hard at this person, that I forgot everything about my breakdown!!!!

Well, I came up with a very short, easy to remember response:

You are VERY wrong.

and if the situation is appropriate, I walk away from them. Those kinds of people whether they are just ignorant or throwing the religious beliefs at you (I am a devout Christian by the way), they don’t care about you. They really don’t. If they did, they would research your illness or ask you for information that would help them to understand.

So again, they don’t care and don’t deserve much of a response whether rude or whatever.

GrannyCFS

‘Just think how fantastic I’d look if I wasnt sick!!!’

Works for me though I’ve only just thought of it so will let you know if I ever get to try
it out!

Beats feeling I have to explain myself and just cuts right through the c##p..

Self-esteem is difficult to hold on to but am obviously begining to do just that – in my head if nowhere else yet!

Sawna ,I relised that maybe I might sounded preachy and that’s not my intention…I’m intrigue ..what is a humanist? one day when your up to it ..can you share? My prayers are still with you …(can’t hurt) By best to you!

There are many honest hearted people who believe in God but do not really understand what the bible teaches about him.

First, he is a God of love and does not punish people with illness. The bible teaches that he cares very much
Ps. 34:18: “Jehovah is near to those that are broken at heart; and those who are crushed in spirit he saves.”

The Bible assures us that the suffering we see around us is not caused by Jehovah God. For instance, the Christian disciple James wrote: “When under trial, let no one say: ‘I am being tried by God.’ For with evil things God cannot be tried nor does he himself try anyone.” (James 1:13)

Praying to God will not provide a cure for CFS but learning about him and his purpose for the earth is encouraging. Praying to ask for his holy spirit to help you endure and have wisdom to cope is beneficial. Recognizing that God is real and even has a name, Jehovah, will personalize your prayers. There is a reason why suffer now but it is not caused by God.

Coping with CFS has given me more empathy for ill people and studying the bible has helped me understand my purpose in life and have a solid hope for the future. My future does not mean going to heaven.

In the meantime try treatments because some of them help. I find the combination of D-Ribose, L-Carnitine and CoQ10 along with other vitamin supplements has given me improved energy. Hopefully there are new treatments in the future that will solve this.

One of my wacky sisters in-law announced that I was not the only one in the family with “fibro” and that she had it to and that HER symptoms were nothing like mine at all, all she had was heavy bleeding during her periods, and that therefore I was a fake and a fraud. I just looked over the top of my glasses and said very slowly and distinctly “YOU have fibroids in your uterus. NOT the same thing. I do wish you’d think before you opened your moth so you didn’t always sound so stupid” She hasn’t spoken to me since and frankly, who is that going to annoy? Not me, for sure.

This is hysterical! Ignorance abounds. You gave me a good laugh when I needed it most.

Yeah, I hate that “well you sure look good!”… one of these days I’m going to put concealer (if I have the energy to find it) all over my little pink cheeks, then some foundation for very fair skin, then maybe a light brush of matching powder. I’ll see if anyone tells me I look like crap. You know I will, but will those same people who tell me I look healthy have the courage to tell me I look sick? Bet not. As for a response to ‘you look healthy’ I just say “I’m not” and leave it at that. Hell with ‘em.

Oh, Kathy’s suggestion about reading “How To Be Sick” by Toni Bernhard is a great idea! It is one of the best, most uplifting books I’ve read in years. I loved it so much I gave a copy to someone in my fibro support group, as well as to 2 sick friends. My parents loved it and gave copies to several of their sick friends. It’s also got great advice for people who aren’t sick, such as caregivers and other human beings.

I have had several people say stupid mean things about how I “Look just fine”… my reply is this…. YOU didn’t look like an idiot either… until you OPENED your MOUTH!!!!
EXIT!!!

My psychiatrist, a sleep specialist, started treating fibros because he said we were the sickest, most disabled people he’d ever treated. More so than cancer patients, (which I’ve also had.)

I’ve had to change my whole life around this illness. I’ve had it for over 30 years now. Since about five years ago I was started on Xyrem, and this deep sleep medicine, has enabled me to get out of bed, at last, and go to gym, movies, shopping, have a little life. Each day is different. We never know in advance how we will be feeling, and our friends and family need to respect this. I do cancel more often than not.

I think we’re a very brave bunch, to keep on living with a disease that is so impossible to diagnose, has no known treatment, and seems to have no cure. It’s easy to get depressed and anxious. I do and thank my therapist for helping me with these unpleasant emotions.

I think if more men got this illness there would be more money for research. As it is now, mostly older women, we’re not a very sympathetic group. (I know we are). But others don’t see us that way. I keep to a strict routine, it’s the only thing that helps me get through the day, pacing myself, eating carefully, and doing yoga, pilates, feldenkrais, what ever exercise can help that I can do, I do.

When I was in the hospital for a severe reaction to a medication, a nurse said she knew some nurses who had fibromyalgia and they just worked harder to get through it. I told her that if they could work through it without getting ill or having to go to bed, then they didn’t have fibromyalgia. She didn’t know what to say to that. End of conversation (and implications about my laziness).

I’ve had fibro for over 40 years and have had all sorts of stupid remarks thrown my way. I used to try to explain but now when someone says I don’t look sick I just shrug and say that it’s just as well I don’t look as bad as I feel and go on to something else. Sometimes if I do try to explain I say it’s like a migraine all over my body and that usually shuts people up.

One time I did really enjoy giving a witty come-back was during a job interview where I had put down fibro as ‘arthritis-related and self-managed’ on the application form. The interviewer kept staring at my hands through the whole interview during which he was very dismissive and antagonistic. Finally I had had enough and asked why he was staring so much and he blurted out ‘it’s funny, your hands don’t look deformed’ and I said very sweetly ‘well, that’s because they’re not. And by the way it’s funny, but your mind doesn’t look completely shut, but it is’ and got up and walked out.

Fortunately I am still able to work. I clean homes two days a week. One that I clean for is a doctor. We were talking one day and I told him how I was feeling because I was in a flare up, but still making it through the day. He looked at me and said he didn’t believe in Fibro and that people who say they had it were malingerers and just wanted to be able to lay around and be lazy all day. Then he said I couldn’t possibly have it because I work hard. Harder than he will ever know! Plus he doesn’t see me by the end of the night, when I can hardly move and have so much pain I want to cry. Just because I CAN work hard doesn’t mean I don’t pay for it later. And what do you say to someone you work for and consider a friend, or at least did until this remark? If I didn’t have to work, I would rather let myself be lazy once in a while.

First of all the topic is, Dealing With Dismissive Attitudes Toward Fibromyalgia & Chronic Fatigue Syndrome, not Religion.

I personally like the “But you don’t look sick” and “But you don’t look Stupid” comment, I might even use it one day.
When I tell someone what is wrong with me, I do it once. If they have issues with it, it’s their issues. It does not take away my pain, change my life or who I am. I’m not going to change their life, their stupidity. Let them figure it out themselves eventually.
If I’m having a good day, there’s much more to do then sit and argue with an idiot.
If I’m having a bad day, I really don’t need the hassle.

I have been insulted some well meaning others who are just mean. I have fibromyalgia, diabetis, arthritis in my spine, knees, right shoulder and hands. Most people just don’t believe in the illness or think that it is a mental illness.

For those people who think it’s a mental illness, I would love to say “Perhaps I am overly sensitive but I would be glad to give you some…as it seems you have no sensitivity at all”!

However, I tend not to strike back at these folks. Usually miserable acting people are really unhappy people. They are their own worst enemies. Karma will take care of them.

What does God have to do with it? That’s what I say to ignoranteouses….
If it wasn’t for God, we’d have no hope!

From one Sharon to another.

Your attitude seems quite judgmental to be. I have FMS quite severely at most times. Do not go on at others about how well you are managing by your attitude. I am a now retired nurse and understand subtle degrees of illness in people. If I had not been I should not have been in this vocation.

My comment for this subject is I just tell people now that I have a CNS disorder. Most people do not have any reply to to that and mostly I do not care too much now about other people think. That is their affair and I have no control over that. I do expect a Medical Practitioner to do research though and be informed. When I worked as a Maternal and Child health nurse and Midwife if someone came to me or I was working with them and their child had a new or very rare condition which I did not know about, I made it my priority to find out about it and be able to work sensitively with that family. It was my obligation to do so. I have 2 excellent Doctors now who always working with me on my belhalf. At first I had a few adverse experiences and my Senior Nurse a work said I was getting worse and needed to be more assertive and find better Doctors, so I did and am Blest. I know people who are worse than me with their condition and some better. I do my best to remain positive but at times cannot be as it is a lie to say otherwise at the time.

We must be sensitive to others experience and not become like the ‘well’ who ‘use put downs’ because they are able to push themselves to do more. Some people are very ill with this condition and I try to remain sensitive to each one’s experience. Let us all remain this way.

This one is for Zena.. Isn’t it awful when our own families desert us with this illness…..
I know how you feel about your daughter because my daughter is the exact same way… it hurts so bad… she believes I need to see a shrink and can’t understand why some days I’m in bed all day or more than one day and that I don’t leave the house… it hurts so much but I can’t make them believe so I have given up trying to explain to my family,,, THEY ARE THE WORST… I have one son who is wonderful because he has crohn’s disease and has suffered a lot in his young life… he knows pain and he sees me day in and day out.. I also have two good friends who try very hard to understand. We have to admit, we don’t understand it ourselves so how do we expect others too…I remember when my hubby took me to my first rhuematologist… he said, “the good news is you won’t die from this” the bad news is, “you’d wish you would!” I have never forgotten that… my dear hubby got two terrible, terrible cancers… fought a 3 yr. battle with just about only me taking care of him, me and my fm and cfids… I WAS TOUGH and made it through, I NEVER LET HIM DOWN.. but now I need him and he is gone and I’m mostly alone with my Lord in this situation.. I do the best I can which this winter has been little to none… I just ignore people now.. WHAT DO THEY KNOW.. most people are just so wrapped up in their own lives that they don’t care and they only want to be around upbeat happy people as their lives are so miserable… so to Zena, sweetie pray for me and my daughter and family and I’ll pray for your daughter and family and I will pray for all the stresses everyone has posted here.
God Bless,
Ginny

I feel too tired to respond to people’s dismissive comments.

why don’t u mention before someone comments it has to be no more than 2000 characters, not after u have made this really good point and had to delete most of your comment?
for the males who do not believe in fm like my brother I feel like kicking him in the balls and saying what? it hurtsb But u look fine. my mother told my family not to pay any attention to me, that I just want attention. so I get ” just deal with it!”. I have such severe pain at times I wish I could cut them off and he wonders why I’m not more cheerful. gee I wonder.

I have heard many odd / hurtful things from people. The worst is when a doctor (clinic of doctors) says he doesn’t believe in chronic fatigue syndrome and they’re practicing medicine in Canada. This issue should have been resolved in the year 2003 when the Canadian Consensus dealing with Chronic Fatigue Syndrome was published. The governments approach to dealing with this illness still isn’t being adhered to. Hearing hurtful unaware comments from public is one thing; hearing hurtful unaware comments from health care professionals is another. I wonder when it will ever get to the point of us, who are diagnosed, being able to be treated by health care professionals who understand effective treatment of these illnesses and understand the dilemmas we are facing.

My response to those who say, “You don’t look sick” is “You’ll be happy to know you don’t look insensitive or stupid”.

By far the worst comment was said to me by one of the many doctors that was diagnosing me.
He said I have “good news and bad news”.
The good news is that it won’t kill you.(referring to fibro).
It will only make you wish you were dead.

Wow! It seems like everyone has gotten defensive and all over the map with this question. Those who believe in God and those that don’t..I love you all.
People usually go by there own experiences and are usually narrow minded to others’ situations. I feel I need to “love myself no matter what”. It matters not what others say “because their opinion about me is none of my business!” Having a chronic illness is stress enough… without taking others opinions to heart. I do what I can and let them think and say what they want. I am too busy taking care of and loving myself. “I am important”. “I have value.” Those are mantas that I keep close to my heart.

I love the T-shirt and other suggestions. Keep smiling !”You are important”

I just had an incident a few days ago where a Nurse (!!) who lives near me berated me for parking (legally) in a certain handicapped spot because it is preferred by a woman who “uses a cane!” … and this Nurse is someone who routinely used to sympathetically ask me how i”m doing with the Fibro etc. !! Unreal!

I had a pain specialist that I had to use because I was having a knee replacement and my ortho believed in my CFS/FM and wanted one on board for the surgery and very painful aftermath, so I used this ass for about four months. Finally, when he said yet again that he didn’t believe in these diagnoses, I said, “Well then, I really don’t believe you’re a legitimate pain doctor so could you stop shoving oxycontin down my throat?” and never saw him again. I found another pain specialist who weaned me off the stuff.

To those who play the “you don’t look sick” card, I lean over very conspiritorally and whisper, “Lots of plastic surgery and Geritol” (I’m 47). Most are too stunned to reply.

For example, if a health-care worker ever questions these illnesses to my face, I plan to ask, “Are you too lazy to keep up with the research or too incompetent to understand it?”

Thanks Adrienne, I think I’m going to need this one Monday. I may add “Or does that treatment not provide your clinic with enough income from pharmaceutical salespeople?”

She says-Exercise will help you think more clearly and you won’t be so foggy.

I say-So I guess that 5k-run you did helped your hearing loss.

Only a person who has Fibromyalgia can understand another person who has this disease.

I was told that exercise would help my foggy thinking.

I wanted to say, “Well, I guess that 5k-run really helped your hearing loss.”

I think you must have been in quite the mood when you wrote that because it does not sound like you. I think you can respond to someone without being rude.

What about a response like, “I hope you or a loved one never experience a illness where the symptoms are not visible enough to be believable because a little kindness when we are not feeling our best can go a long way towards healing.”

In my experience turning people off turns people off.

I miss a lot of work because of the intense pain & horrible exhaustion from my Fibro. My job is in jeopardy because of this. Whenever I miss work, I hear “Hey part-timer”. I work in a factory with lots of heavy lifting. I set up & run presses all night. If the pain weren’t enough, the Brain Fog is extremely hard when I forget where I am in the setting-up process. Very dangerous!!! My family Dr won’t help with Disability because he feels ‘inactivity’ makes it worse. I don’t want to do nothing. It’s just so painful doing my job. He says to find an easier job. Sitting, standing, bending, twisting & just about everything else hurts. I’ve dealt with this for over 15 years. I am a single mother of 2 grade school sons. I can’t live on $8-9/hour! When I get the ‘part-timer’ comments, I explain it’s the Fibro. I just get an ‘I was just joking’ answer or something on that line. Lyrica & Savelle didn’t work. I’m on Amitriptylene & Cymbalta now. They seem to be helping a little. I also take anti-inflammitories & muscle relaxers. I don’t leave my house,answer the door or phone, or even open my curtains when my kids aren’t here. I’m a “career canceller”. It’s easier to just not go, lie & say I have the flu (you know, a ‘real’ illness!) than to argue about the fact that I can’t bring myself to go. I’m in bed for the whole weekend. Sometimes, I feel like I may go crazy with this!!!

I love this from a rheumatologist, “you must look in the mirror and say I HAVE AN EMOTIONAL PROBLEM AND I MUST FIX IT’ My response to him “If you experienced everything in your life as I have in mine, you would be a raving lunatic; but perhaps you already are.” Needless to say I never went back to him…Also have been told that because I am a secular humanist and don’t believe in God that is the reason that I have fibromyalgia….I just loved this one coming from a so-called christian with a lower case c……I don’t believe in any supernatural entity and my life was not preordained by anyone but myself….and circumstances…….

I love this from a rheumatologist, “you must look in the mirror and say I HAVE AN EMOTIONAL PROBLEM AND I MUST FIX IT’ My response to him “If you experienced everything in your life as I have in mine, you would be a raving lunatic; but perhaps you already are.” Needless to say I never went back to him…Also have been told that because I am a secular humanist and don’t believe in God that is the reason that I have fibromyalgia….I just loved this one coming from a so-called christian with a lower case c……I don’t believe in any supernatural entity and my life was not preordained by anyone but myself….and circumstances…….

I actually heard the “but you’re always smiling” phrase from a co-worker who also has FMS. My response was “I fake it, and I’m not doing this alone.” She then asked about the local support group, and started attending.

I do find that not everyone needs to know how I really feel everyday. I guess I’m a lucky one in that I can still work full time as a teacher. I do have to educate students and faculty about not wearing perfume around me and not to touch me, because it causes pain. For the most part, people have been understanding, and I’ve been able to do lots of education. Most people know someone else with FMS, and some have told me that me talking about it opened their eyes to what their sister-in-law (or other relative or friend) was dealing with.

I do worry when we compare our symptoms each other’s, though – the research is leaning towards different variations among FMS symptoms. Can’t we be kind to one another?

I have, on the other hand, dealt with doctors (specialists mostly), who think that because my diagnosis includes depression, that it’s what causes all my pain. Let’s just say I’m truthful and to the point about how the appointment went when the evaluation comes in the mail. Oh, and I don’t go back.

Dear Robin R

Yes I was having a rough day. If I offended you, I do apologize.

It’s just that it is hard to explain that even if I do exercise I still have fibro-fog.

That’s pretty much what I should have said.

Thank you for pointing that out to me.

Take care,

T.A.

Wow! So many comments!

I used to talk about what could be wrong with me a lot before I was dxd. Well-meaning people would ask me embarrassing questions at a party, like “how’s your sleep, are you able to get out of bed?”

After I was dxd, I kind of announced it. I ran an organization and my brain fog was so bad, I could not keep meetings focused or follow an agenda. After the pseudo personal announcement, a friend brought me flowers. As she was leaving she told me how finding the correct antidepressant was what helped her “fatigue”! What a punch in the gut! Obviously, despite my spelling it out, they just didn’t get it.

So, I don’t talk about it loosely. I told my siblings; nothing. That was so very hurtful. My parents don’t understand the disease, but they see my suffering and acknowledge it. My kids feel disappointed at times, understandably so. My husband waffles from understanding to frustration.

Now, I only talk about it with a few people. I have also found other people say,”yes,I have it, too” have often been misdiagnosed or my symptoms are so severe compared to them, they can’t understand my non-functioning!

When I had surgery, the surgeon made me have a psychiatric evaluation, due to my non-reacting to the pain meds and my weepiness. I was so proud and so vindicated when the psychiatrist’s report revealed I was completely sane with no depression or addictive traits!

I talk about it if it comes up, but like Esther said. I focus on what I think, not what others’ think. Other’s no longer validate my feelings or how I should feel. I try to focus on what I can do and what I can do to make me better.

I do not know anyone else other than the patients at the clinic I go to that have CFS….and y’all!

Dear Robin R

Yes I was having a rough day. If I offended you, I do apologize.

It’s just that it is hard to explain that even if I do exercise I still have fibro-fog.

That’s pretty much what I should have said.

Thank you for pointing that out to me.

Have we met before?

Take care,

T.A.

My rheumatologist dx’ed me in 2007 after suffering a horrific surgery for a pancreatic precancerous tumor. Shortly afterward my oncologist found I have pre-leukemia -a form of stem cell disorder.
Yet neither can be tested definitively.
I have had a disability judge actually write that my condition may be from being obese. And I, too, have had friends say “You couldn’t logically have pain for years it makes no sense”. I suffer miserably, sometimes to the point I just want to die. My rheumatologist said she’s seen suicides from fibro, the pain doesn’t get any better, but it also doesn’t get any worse. So I patiently await a cure.
In the meanwhile I take Savella, Gabopoetin and Flexeril, which helps me enough to get through miserable days.
Honestly I cannot work, just caring for myself is a full time struggle.

God should stay out of the health business, otherwise, all those who suffer with any illness could be blamed…religion and illness are not mutually exclusive.
I also hate ignorant if not stupid comments. I have Fibro, then I got a thyroid condition called Graves disease, have had clinical depression for years….have pain constantly, am tired always, I have some arthritus, in a few places, and was recently diagnosed with COPD. It is a lot to contend with. When I hear the typical, “Hi, How are you?” I rarely say anything but fine, or tired, which is always true.
People do not get it!! Nor do most want to talk about it! We all just ask that question, as a social grace.
I have stopped not telling, but instead, to my family, I tell them I have been in bed most of the week. That speaks volumes!! I realize how hard it is for them too.
Those who love me want me to NOT be sick, and with every call I can hear in their voices a hope I will say I am better!!! Now I just say “you already know the answer to that question.” Then I move on to other conversation. I dont see the value in always talking about how I feel, or health issues. There is so much more in life to discuss…..
Ignorance can be ignored, or if the desire is there to learn, People can become informed. My several disabilities are all invisible.
Sometimes I think as a group with disabilities, we should wear a black armband with a fist on it.
May sound silly but it sends a message and it might even get me some help at the grocery store etc, when I ask for some type of help!!! instead of getting annoyance from staff. And others… MB

A woman I car pooled with asked me, accusingly,”
what is this illness you have. I cannot understand it.” I told her, my Drs. don’t know what it is, or how to cure it, why should you? That ended her questions. My brother, a Dr. , just thinks I enjoy being sick. I asked him once, don’t you have any patients with fibromyalgia? Yes, he answered, but I guess they don’t complain to their cardiologist.

My husband and kids have seen me dealing with it for over 30 years now, and know that I’m doing everything I can do to feel better. My insurance Co. just changed my meds, and they’re not working as well. We put up with an awful lot presently.

In the future this disease will be understood, and hopefully, even cured. Then we’ll be known as having been so brave, just living with it. It’s really a terrible challenge. Since using Xyrem and a Vpap machine for sleep, I am more able and have less pain and stiffness. I do use a disabled placard, and no one ever has said anything to me about it. Maybe I don’t look as well as some of you do. I’m 70 already.

I have just read through every single comment (and am exhausted) i have two recent friends – who really seem to understand and ask “how ARE you feeling today?” and really want to know. but unfortunately my family just do not get it. I used to send them articles from Adrienne but when I once asked if they read them – they said they did not have time!! I am a widow in my 60’s and live alone – not easy, but have been very lucky in finding helpful – but very expensive practioners. the one is a lady with fms and chronic fatigue and has had cancer and has got herself into some kind of remission, but has a very strict regime which works for her and often works for me too. this is diet, no exercise but stretching -Ii cannot get out of bed without this – and many many supplements. and the best thing is that she put me in touch with a caring medical doctor who is an anti aging specialist and has worked out a regime of supplements – many many – for me which do help.. When I make an effort and put on make up – I am told WOW you look good – but when this is too much for me I am asked ” why dont you make an effort and not walk around looking half dead” – DUH?? this is mostly from family. To all of you who wrote in – I wish you healing and the ability to find what works for you and understanding and helpful support systems to manage this disability as best we can. And understanding from family and friends. with love.

I can relate to SO much of what SO many of you have said! I have some wonderful people in my life who have surprised me with their genuine concern and interest in how i am doing. Unfortunately, I think there are probably more that have surprised me with their lack of concern and disinterest. I have a very good friend that has been my life for about 25 yrs. who has literally never asked about how I’m feeling since my diagnosis 3 years ago. In fact, she never even acknowledges my health issues unless it comes in a conversation because I’ve brought it up which I rarely do. Same thing w/some family members. I really don’t get it.
But, I try not to focus it on it because i have enough struggles of my own to deal with. Listening to all of you is sooo wonderful though…makes me feel like I’m not alone among these clueless healthy folks, so thanks!

“you don’t look ill”

“you don’t look like a doctor”

Thank you very much…I finally chuckled!

Most of the Drs. & hosp. in my area list Fibro as a “mental” illness. So if I don’t know the Doctor I don’t tell them. I have one son that believes in Fribro. and my other thinks it’s a mental issue because his college prof. told him it was. I just don’t talk about it around him anymore.

I’m sorry that so many of the comments are angry responses. I’m especially disappointed in Adrienne’s remarks. A kind word turns away wrath and you catch more flies with honey than vinegar are not just platitudes. They actually work.

When we respond with anger, it often reflects what is in our hearts. I know that most people don’t have a clue what I’m dealing with, and angry retorts are not going to help them understand. And why should they—they are bombarded with the horrible TV ads for meds that purport to “heal” us and that show a woman doing work that I’d be unable to do.

I prefer to deflect hurtful comments, e.g., “You are looking good today,” with something like, “You know, that’s how it is with fibromyalgia. It’s an invisible illness.” And I leave it at that. Or, “Thanks, I wish I feel as good as you say I look.” Or, “I’ll be paying for it later.”

I’m fortunate that no one in my Christian circle has accused me of lack of faith. I don’t know for sure how I’d respond to that, except to say that God is using me for something, which I believe.

This disease is so unfortunate for all of us. I’m sending you all gentle hugs.

Your voice is a very gentle one, but a gentleness with great strength.( yes I can see it even in the typed word) I am sure “fibromate” that your kindness and thoughtfulness heals many in the world around you! God bless!

Along with FM and a number of its cousins like Lupus, Raynuad, Sjogren’s, etc, I am a type ‘A’ person, so even when I am in such pain I want to cry but there is something that needs done and the crew person isn’t getting it done, I take a deep breath and charges the hill. I cry inside as I am sure many of us do. Now the owner is someone I have known longer than I have worked for him so he has seen my health bottom out over the years and rapidly the last 4. Still it is HIM that gives me the hardest time. I just had spinal epi-injections that give you that false sense of I CAN PRESS 900 LBS the next day, but I know that isn’t how it really is. His comment was, ‘Those shots took care of everything I see.” Not by a long shot. So my comeback was, “Is it that you don’t believe what I am saying to you or the medical reports and the L&I on-going claim or that you never did look up the list of things I asked you to so you can get a fraction of an idea of what I live with every moment I breathe? I believed what you said about your knee damage and why you can’t bend down, so what’s your problem about believing my issues Brain Fog?”
Yes, I can get an attitude with zero minded people, but boy do I hate having to break in a new medical person. Thing is we all assume that all medical folks know what is going on. Very much not so. It is we that have to educate them and that can add to the stress we already have. So it isn’t just everyday people that say the most ignorant things, it is also those who have pledged to “Do no harm.”
No wonder we get so depressed and heart weary.
Has anyone had a hard time trying to find someone as in a Mate because when we let them know what is going on they either don’t believe you or dump/run away because it is too much to ask for them to be by your side come what may? I have found finding even a ‘friend’ is hard enough and finding a Mate is not going to happen. It just makes you shake you head at all the ignorance.

Wow…after reading a few pages of this forum, it appears that being a Christian is not a popular faith to have when it comes to FM. I too have FM… I too am a Christian, I too have had judgemental Christians who mean well, but share opinons that harm more than help.
I find that people who do not have FM will never understand someone who does have FM. I also find that people who are not Christians and have FM, will never understand someone who is a Christian and has FM,
And vise versa.
There is a desperate desire for Healing, duh…anyone who knows God personally knows that “He Can” heal. If your child asks for healing and you have the power to heal, I have no doubt you would do this for your own child. But Almighty God just does not “Have” to heal. Do I think that everything in this world including healing from my pain is due to me in my lifetime? No Way….ignorance is Not bliss when it comes to my own so called facts about my own expectations of God.
Call it preachy, call it judgemental Christian attitude, call it whatever makes whoever feel better about their own faiths, but my life is nothing to brag about, my struggles are nothing to write home about, my pain is more isolating than encouraging, but my personal relationship with Jesus happens to be my only hope in dealing with all the above and not only that, He happens to be my only ticket out of this world and into a brand new body where there will never be pain again.
Please don’t take for granted the word “Hope”, it is so important. I have not demeaned anyone elses faiths or personal beliefs in my words. We Christians did not come to faith in Jesus because we thought it would be easy, we just found that Hope has a new meaning for us.
My story is no different than anyone elses here, I am a man who has lost pretty much everything because of FM. One day I will share it, and I will openly say that it Sucks!

I recently moved to a new state so I have new doctors. I have already changed my PCP once and was told that this new guy is “compassionate”. I sure haven’t seen that yet. He knows that the only thing I’ve ever been able to take for pain is darvon and now it’s off the market. He hasn’t suggested or tried anything else and Fibromyalgia is just one of my pain sources (arthritis, lupus, etc.). I told him I was trying to get in to see a rheumatologist and he tried to discourage that saying that ‘it would only confuse the issues’. Well I saw him the other day and said “I guess I’m going to keep the appointment with the rheumatolgist since you seem much too uncomfortable to try to treat any of the pain I live with every single day.” It didn’t seem to phase his dismissive attitude but at least I made my point. No, I don’t blame God for any of this. He made smart and dumb people too and remember what they call the guy who graduated last in medical school? “Doctor”. Please don’t trust them all.

Jean I think I understand what you are saying, my trust in doctors is very very limited. My mother was diagnosed after 15 years of being misdiagnosed, when the doctors finally came to the realization that she had FM, they had already ruined her with 15 years of Medications that she never needed to take, our family believes that she passed away while she was sleeping in 2008 because of the medications that finally overtook her body. I would very much like to never take any medicine for my FM for that very reason, but the pain is just too much and my resourses are so little that I am only taking Gabapentin, which is generic for Lyrica. I was diagnosed with MCTD also, Mixed Connective Tissue Disease, (lupus) I am not even sure I trust the doctor with that diagnosis, even if the ANA was positive.
I don’t blame God either, even for my mothers death, God is good no matter the pain I feel and my loss.

This used to be hard for me, when i was first sick, but not so much anymore–I know I’m sick, and I don’t feel I have to justify myself, or my illness, to anyone! I don’t think I “have fibro for a purpose,” but since I do, I might as well be useful–I figure part of my function in the universe now is to explain fibro to people who don’t know anything about it. So when someone makes an insensitive or uninformed comment, I just explain a little about the disease–it’s a disorder of the central nervous system, there are more treatments now, but they don’t all work for everyone, and so on. Most people are open to listening to me, but I have no compunction about being a little sharp if people are rude! Helpful comments: “Have you read anything about fibro lately? There’ve been some real breakthroughs in research in the last ten years. You can research it on line” (use this one on drs–they hate it!) or, if I’m feeling cranky, “A real doctor at least takes a complete medical history before they give a diagnosis!” Or, with a big smile, “Wow you really don’t know anything about fibromyalgia, do you? Why don’t you look it up online?” I’ve used the analogy to diabetes too. All this got easier once I realised that my illness is terrifying for a lot of people, even drs–if it can happen to me, it might happen to them–and that’s why they prefer to believe it’s my fault, it makes them feel safe. I think that’s also why some people want to believe it’s a punishment from God–that means they’re safe, since they’re “good!” The sad truth is, awful things happen to people sometimes, for no reason I can understand–not just fibro, but car accidents, strokes, brain tumors, acts of violence…. All I can do is try to learn to treat everyone–including myself!–with dignity and compassion. And not take any crap from ignorant, frightened, uninformed people!

I once was getting out of my car at the Post Office.
and a man came up to me and said, “You’re parked
in the Handicapped spot.” I pointed to the blue
placard hanging from my rear view mirror. The
man then said, “Funny, you don’t LOOK
handicapped.”

I replied, “Funny, YOU don’t look ignorant.”

I have a co-worker who told me that I wouldn’t even have fibromyalgia if I was eating the correct diet. No sugar, no packaged foods, no gluten, no corn, etc. More protein like meat, and more vegies. Well, I agree that a good diet is important, but I don’t believe that diet controls all diseases. I don’t believe that gluten is causing fibro. I don’t believe that sugar is responsible for it either. Why do people insist on telling you how to cure your illness? Why can’t we all just shut up and listen to each other and be supportive instead of judgemental? When did every lay person become an expert in medicine? Why don’t the medical doctors and nurses believe in us? It’s not our fault that we got this illness any more than my boyfriend is responsible for getting lymphoma. But he gets compassion, empathy, understanding, support, love, and all of the best wishes from family and friends. I’m lucky, because he has become more understanding of my illness due to his own. And I do have some supportive people I can talk to sometimes. But yet I feel so alone in this. And PLEASE do not start up with the religion stuff again. Let’s leave that out of our posts. It’s not any more fair to judge us on our beliefs than to judge us on our illness. We should all accept each other as we are. If we can’t talk to each other without throwing God amd religion at each other, how can we ever expect anyone else to believe in us? Let’s keep the posts about our common issues, fibro and secondary illnesses, not religion. Please????

I have had fibro for over 25 years. I had to quit my nursng career because I can no longer stand for longer than 20 minutes and the pain is so bad I have to lay down a lot.
The worst comment made to me was just recently by my son. He wanted me to come spend the weekend with him and his family and spend time with my granddaughter. I have been too ill to visit for the past year and have been bed bound for a lot of it. With nausea and vomiting for over a year every day due to IBS along with the fibro pain and CFS, it has been very difficult for me to even visit my granddaughter. I love them so much and wish I could spend time with them as they want me to. After that weekend of staying with them, I received an email from him stating how angry he was that I had to spend most of the time laying down in pain and taking pain meds to get through the weekend and if I am in that much pain then I need to stay home and if I think I’m going to come lay up on them, then it is best I don’t come visit at all. He said I LET FIBRO and PAIN PILLS run my life and I am not the mother he grew up with and he is very disappointed in me. I have cried my eyes out and I am so heartbroken. I went to see a new pain specialist and he laughed at me when I said I had fibro. He said to me “I Don’t believe in Fibro because you can’t see it or touch it and I won’t treat you for it but only have you do water therapy because it is muscle related and all you need to do is exercise.” Plus people with fibro are only looking for drugs and I refuse to do that. So if you want me to treat you then I suggest you find another dr. This is not how I envisioned my life to be. I use to be the happy and was always on the go. Now I feel like an empty shell with nothing to look forward to but pain, pain and more pain the rest of my life. I want ME back again. I want the woman who was happy. Where did she go to? My heart goes out to anyone suffering from this. I pray for a cure.

Marilyn, your son’s comments ARE heartbreaking! I too, am an RN that can no longer work due to pain from multiple issues. My own children behave similarly, though not verbalizing quite what your son did, they do so passively. They NEVER ask how I am. I can be having the most horrific day, and if I mention one bit of it they don’t respond at all, but just continue to finish their request for babysitting, etc. It seems I am only as valuable as what I can physically do for them. This is more painful to me than my physical problems. I always thought they loved me, but when it counts most, I am not supported at all, and sometimes their friends have even made comments that of course I should babysit for my own grandchildren (5 of them all under 6!) any time because I don’t “do anything” all day anyway! The pain is driving me mad it feels like, and the isolation I feel from lack of any compassionate company is unbearable. Also, I could possibly write a book on all of the negative comments made by MD’s and their various staff. I have spent the last 20 years trying the best I can to help people feel comfortable and to heal, and I can’t believe the cruelty I now experience when it is me that could use it… Sorry, I am in a poor state of mind, I know, but just wanted to say that I relate to you, and support you!

My favorite come back when someone says to me that I do not look sick is, “that’s amazing, you don’t look smart.” It is not quite an insult and usually people just stand there trying to decide if they have been complimented or insulted.

To NotMeHim,

Gabapentin is generic for Neurontin not Lyrica. If any of the RN’s disagreee ………

I felt that I needed to make the distinction because some people may not know what Gabapentin is .

Warm gentle hugs to everyone !

“It’s easy to blame everthing on that. [Fibromyalgia]. You know, some doctors don’t even believe Fibromyalgia is a real thing”

What’s hard for me and any snappy come backs is that unlike diabetes, there is not a blood test that “proves” I’m sick.

Ive gone back and have been reading comments, just have some thoughts to share. I also am Christian. To believe God has “punished” any of us is ridiculous. The bible clearly says “all good and perfect things come from God” (not illnesses). That’s another topic altogether though. All of us have the same thing in common: some kind of bodily or psychological trauma or illness (not sin!) prior to becoming sick. All have sinned. Do All have fibromyalgia?

Any chronic affliction is a faith shaker, for sure. God may heal you, He may not. It’s something beyond my understanding. Like others I have learned to find joy in life whether or not I’m healed. I don’t have to be healthy to love God. My love of Him is not conditional on whether or not He answers my prayers the way I want. His love of me is unconditional, it’s the least I can do.

Religion aside, we have to find what small joys we can throughout the day. That means choosing to not focus on the eye-rolls, and nay-Sayers.

I think it’s hard for our mothers. They don’t like it that we are suffering and surely! there must be some way to end it. If it were my child I would probably be saying something Mom-like, like “take vitamins”, and it be well-meaning.

The most frustrating thing to me, I think, is those people who don’t understand why I can’t go camping with my scouts anymore; why I can’t pick up the limbs in the back yard; why I can tend the nursery at church; etc. I just say I have a health condition, if I say anything at all. It’s harder when it’s family. I’m just thankful for those in my life, like my husband, who DO believe me and DO understand.

There were 138 comments when I posted this and I haven’t read then all. I find the most support from Fibro communities like this one. Until there is a cure, I’ll just hang with you guys.

Is this topic still being discussed?