It's a sad reality that having fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) means sometimes having to deal with insensitive comments made by people who, A) don't understand what these illnesses are like, or B) don't believe that they're really illnesses. These comments can put us in an uncomfortable position, and I've found that it pays to think ahead of time about how I'll respond.
When they just don't understand: For people with ME/CFS, the standard one is something like, "I get tired, too." We also hear things like, "My knees have been really achy lately - maybe I have fibromyalgia." These comments are aggravating, but they're generally from well-meaning people who are trying to show that they can relate to us (even though they're showing how much they don't.) Personally, I don't feel like I need to respond to these comments. If someone made them repeatedly, though, I might respond with a lighthearted comment like, "I don't 'get tired,' I never feel awake," or, "Wow, I wish only one part of my body hurt."
When they don't believe we're sick: It's especially rough when these come from doctors and other health-care workers. I know people who've been told, "That's just what they tell you when they don't know what's wrong," or far worse. I haven't encountered doctors like this personally (I know, I've been incredibly lucky!), but I have a response prepared: "You don't pay much attention to research, do you?" Then I'd leave and find a different doctor. If they were part of a clinic or hospital, I'd send a complaint letter to the administrator.
When it's a non-medical person, we each have to decide for ourselves whether it's better to respond or not. It's normal to get defensive and fight back, but that could lead to an even more stressful confrontation. If you feel like you need to say something, be prepared to put the offender in the hot seat. Jennifer Heisler RN, About.com's Guide to Surgery suggests simply saying, "I'm sure you have no idea how insensitive that comment was." You could also say, "You're lucky you don't know just how real this is." One of my favorites is, "Do you believe in MS and Alzheimer's?" When they looked shocked and say, "Of course," then you say, "A few decades ago, nobody believed in them, either." Once you've given your response, walk away. That will show how offended you are, and it also will allow you to get out of there before you become emotional or get tripped up by brain fog.
What comments have you had to deal with? How did you respond, or how do you wish you'd responded? Share your experience by leaving a comment below!
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I do wish more people knew and understood about CFS and Fibromyalgia!!! My mom said stuff like “there’s no such thing” or “that’s what the drs. say when they don’t know what is wrong” making me feel like it is supposedly all “in my head”. It does hurt to hear things like that and get accused of being lazy is one of the worst!!! I actually saw a supposedly “Christian” health program and they began talking about Fibromyalgia and sounding like anyone who has it “brought it on
themselves” and even had the gall to laugh about it!!!! Some “so-called” Christians are
heartless!!! Needless to say, I’ll never watch that show again!!! Gentle hugs to all who, like me, are suffering so badly with FM and CFS!!!
I’ve been pretty fortunate. No disbelieving doctors, no one’s ever said anything (to my face, at any rate) about not thinking fibro’s real. But I do read things like the infamous NY Time’s article, and I get hugely mad. I have to remind myself that’s not good for my condition, and work hard to regain my equanimity.
It just astounds me. I’m even writing a book about this phenomenon. It’s not restricted to fibro, I know (look up Morgellon’s and wonder – I mean, really!) but this mistrust of only certain kinds of illness puzzles me greatly. I thought it was just because pain was so subjective, or appears to be, but … then there’s Morgellons, with its visible manifestation (the fibers, which at least one textiles/fiber expert has gone on record as saying is unlike anything he can find). So – I don’t get it.
And to understand it, I’m afraid I’m going to have to interview people who don’t believe fibro exists, and that frankly concerns me a little.
I’ve had FM for the last 13 years so I’ve pretty much heard all of the comments. I had a math teacher in college who gave a quiz every morning. The class was at 7:00 a.m. and the only reason I was in it was because all the later classes in the day were full. When I got a C- due to my lack of attendance and missing the morning quiz I tried to explain my situation. When I told him I had fibromyalgia he put a hand up and said, “I don’t even want to talk to you.”
I retook the class from another teacher who understood my fibromyalgia and let me come in to his later classes to make up the quiz and got an A in his class.
Looking back I deeply regret not complaining about the first professor. I was young and scared. Now, if I could do it over again, I would have went right to the dean and informed them the teacher was violating the American’s with Disabilities Act.
My favorite comment “I’m so tired, now i know how YOU feel” and I always want to say “really…let this go on for 5 YEARS and then we can talk!” Or, “I was diagnosed with CFS but I recovered”. I sometimes think this illness is overly diagnosed in people that don’t actually have the illness and then they recover and look at me like “why aren’t you better”.
The writer of the article is so lucky she/he has never had a doctor say something disparaging about the illness. I have been told that cfids is nothing but a “trash can disease” and a “mental illness”. And it’s easy to say that you would just make a witty comment and walk out, sometimes the words just don’t come…that’s the bad part of the illness, and if you are having a really bad day well bursting into tears of frustration simply confirms what they’ve said.
I know that our friends and families and caretakers mean well and I know that they really can’t KNOW what is going on in our bodies, I just wish people would think before telling me how “healthy” I look or sound. It doesn’t make me feel better…it makes me feel like you are pooh poohing my REAL illness.
I just cry. For me, it isn’t other people’s words and actions, it is my body not being able to do what it did. Nearly twelve years gone to this foggy, stupid, looks like lazy but it is much worse. The Drs treat the depression and pain and any measured imbalances … I accept what I may not change. “Life should rage, rage at the dying of the light” – that Dylan was an idiot, too.
Relax, we are too messed up for the Special Olympics. We need not flaunt our little follies. I just cry. Music still sounds wonderful, just a bit more distant.
I have CFS. I stopped worrying about what other people think. Who cares? I know the truth about myself. I make sure I have a doctor who will treat me, and I don’t discuss my illness with anyone other than my closest friends and family. Problem solved.
One of my idiot sister-in-law who always mocks my using a cane, etc. annouced one day “You aren’t the only one with fibro. I have them too and it’s nothing like you say it is. All your so-called pain and fatigue is just an excuse so you don’t have to do anything.” Now I had heard she’d been diagnosed with uterine fibroids, and so I put on my sweetest face and said “What you have is uterine fibroids. Not the same thing at all. Perhaps you ought to get your facts straight before you open your mouth and say anything more stupid and insensitive.” We had no relationship in the first place so I was not worried about damaging it. Shocked the daylights out of the rest of the family, though as no one ever talked back to this sister before.
I, too, have gotten to whereI don’t say much in return to uneducated comments. My very best friend, who is married to a pharmacist, says they don’t think FM or CFS is a real disease. I was shocked and hurt, but, hid it. Now when she says things like she is really tired, I just say, well I’m glad a good night’s sleep will help you. I can sleep at night and nap during the day and never feel rested. Or she can complian that her knees hurt and I sinply reply “I wish there was a time when mine didn’t hurt”.
I don’t know if she will ever catch on, but, I feel better knowing i have said a few things that indicate I have a REAL disease.
I am blessed with a family and many friends who DO believe I have FM. They even know to ask, lovingly, if it’s ok to hug me. We all need people like that!!!
I just had an incident like this with my doctor on Wednesday (psychiatrist). He said he doesn’t belive in FMS or CFS and that he thought it was all psychological. In his own words “A reaction to life.” He also does not feel there can be a bacterial/viral cause. To quote again “Someone doesn’t have a lot of money and they are frustrated about paying bills. They begin to feel ill. Suddenly, they win the lottery and get better.”
I was pretty frustrated and insultated at the same time. This was a man who has a degree in Neurology? The mental health arena wants to take these diseases over as a mental health issue. We just can’t seem to make much progress with certain members of the medical community. Thank goodness for the Whittemore Peterson Institute. They will be researching these for what the truly are…neuroimmune diseases (just like MS and other neurological problems of the like).
I BELIEVE IN MY CASE THAT LIFE SITUATIONS OVER 40 YEARS,HAS HUGE PART OF WHY I HAVE FIBRO. IT BEING OVER STRESSED FOR SO,LONG AND NOT BEING ABLE TO COPE WITH STRESS SO, IN A SENCE I FEEL RESPONSIBLE FOR MY OWN PLIGHTTODAY.MAYBE IT ISN’T THE CASE FOR MOST,BUT I AM CERTAIN IT IS FIR ME.
This is so sad to hear about. This is one of the many faces of CFS…no one should have to suffer a fate like this. I will continue to tell the world that these are NOT psychological illnesses. This story will touch everyone here.
http://www.fightingfatigue.org/?p=5279
Sherrie – I do understand your concern about Morgellon’s and I know exactly what you mean.
Good luck on your book.
On Mother’s Day of all days, my grown son and daughter told me I was high and getting addicted to pain pills and I should stop taking them. I was extremely hurt. I had gotten up at 4:30 a.m. and traveled by car for 3-4 hours to get there and I was exhausted, hurting, and had Fibro Fog. Our relationship has never been the same since.
Especially if the person is a Jew, Christian, Muslim, or Baha’i, though no doubt others, you can suggest they read the Book of Job in the Bible (a most readable book)…
The book refers to the trials of Job, including friends who insensitively insist his trials were due to his having sinned. While outright claims of “sin” of CFS sufferers might fortunately not be that common (at least not as much as the more minor but still frequently exasperating needling about effort/attention-seeking/imagination), I think that when religious people see that God also rebukes those who confidently insist on such assertions (i.e., not just rebuking those who actively look for trouble, for example), they might also be given pause to consider whether they, in their accusations of malingering, lack of exertion, are indeed ascribing a kind of “sin” to people who are themselves suffering.
The Book of Job, moreover, is a potentially insightful read for some of us CFS sufferers as well (I won’t spoil it, though the lesson for Job is not easy to put into words anyways; if you’re not inclined to read it, you really should, I think, at least read the Wikipedia article). Again, the book is quite easy to read, as you might not expect, yet it is transcendent, even mystical, rather than simplistic/black-and-white.
Of course, more research-based or intellectually-based answers will probably work more strongly for other people (or even both in combination). I think I actually convinced a doctor who was skeptical after I calmly but ardently pointed out details of my own work ethic/advanced education background/etc. before the illness. Regrettably, as in many others of life, the “skeptic” or “cynic” is often given greater automatic credence, despite the evidence. Hopefully, as evidence and awareness-raising build, we can get to a point where the skeptics are dismissed as easily as the likes of Holocaust deniers.
While sometimes ardent advocacy is definitely well-placed or called for, I don’t think it is helpful to get nasty in response. Think about how you yourself may dismiss others, such as minorities in your country complaining of their experiences, etc. We all want some evidence if we haven’t experienced something ourselves, and for those who don’t discern it out of empathy or witnessing our sincerity, lack of energy, or lack of any reason for malingering, the more we can use our creativity to reply in a way which is likely to speak to that person’s concerns (perhaps though not necessarily the same way which would convince us), the more likely we may make our lives easier or at least possibly help reduce future problems for others. Though we probably can’t pour our energy into the CFS problem, since we don’t have much to spare, we can still make do with our circumstances and take an intelligent approach and not get deterred from our own role in public awareness, just as we might not wish for minorities in our country (if we are not a minority) frustrated by being put in a box, etc., to just give up and get bitter.
We might, for example, openly admit the possibility to such people (and express our likely even greater displeasure at that than our listener) that there are genuine malingers out there who hang onto the chronic fatigue label, and might give it a bad (or rather, fake) name for those who meet them. Of course, as the Wikipedia article states, the supposed benefits of getting attention or whatever from such claims is pretty slight (if we only could get attention!), so I don’t think and wouldn’t want to assume that there are that many people doing this…
But anticipating, acknowledging, and proactively responding to likely or expressed suspicions is, I think, more likely to be successful than immediately getting indignant, especially since most of us all want proof in some similar situations. Nevertheless, I agree that sometimes objectively pointing out how such comments can feel hurtful (albeit often unintentional) and/or point out how their assertions, while common, are frequently faced by other sufferers besides ourselves. Often a non-threatening attitude will give credibility to the speaker, and a threatening one will be taken as the opposite.
Btw, Alan Marcy, I liked your poetic expression, and hearing the insights and even anguish of all the others here…There is a feeling of solidarity here, for sure, at least for me…
What hurts me the most is the looks I got after re-gaining most of the weight that I lost.. And people, loved ones, caregivers & friends saying that it’s too bad I gained back the weight, They look at me like I use my Fibromyalga diagnosis as an excuse not to exercise!!!!! They say that if I could only take the weight off, I wouldn’t have to worry about fibro anymore!!! It’s not a fat person’s disease!!!!!!!!!!!! I find that my foggy brain holds me back from dealing with these “well meaning people” the way that I need to.. Not bite their heads off, but at least TRY to explain!!! And then I remember, Oh yeah, that usually falls on deaf ears!!!
I was diagnosed with Severe FM/ME-CFIDS in ‘02 but I’ve had it for longer..I have been referred to psychiatrists at least eight times over the course of eight years..To these doctors I have said, “It is definitely in my brain, but not “all in my head” Thanks for wasting my time.” Then I have walked (or rolled) out. When someone tries to compare their being tired to my FM/ME-CFIDS I simply ask them if they have a computer, usually they do, so I tell them to google Fibromyalgia and CFIDS Symptoms and READ. That’s all..Many times I have gotten responses from some of the people who actually did it..Some of them are apologies and some are just “Wow, I had no idea..” MMM-HMMM! That’s what I thought.
I think the response varies with how we are feeling at the time..If I’m feeling well and someone says something stupid, I can ignore it because I’m feeling good and I don’t want to spoil the rare good time I am having. If I’m feeling just a bit unwell, I can usually be kind about it and try to give the person a better understanding of what we go through..If I am not feeling at all well, watch out! LOL
I have found that trying to have a sense of humor about things can help..Not all of the time, but a lot of the time..If I can laugh I can reduce my stress. I get angry at doctors because they should know better, but I have to remember that regular people in every day situations don’t always know a lot about these things and to get angry only hurts me more.
The longer i’ve lived with fibro, diabetes, pcos….the more i just don’t care what anyone else says to me or thinks…i’ve come to expect stupid, thoughtless comments from people, everyone, strangers, aquaintances, family. I’ve learned to talk little and explain myself even less. It’s just nobody’s business how i’m feeling or how i’m doing. If i don’t feel up to going along with somebodies idea of what “we” all should do…i just flat out say no, i’m not interested and will not be persuaded otherwise and don’t even try to make explainations or excuses for them to make stupid comments about. I’d rather they think i’m just stubborn and anti-social then have to listen to one more person tell me it’s all in my head or it’s just a made up illness that people use to get drugs! I’m not taking any prescription meds for it right now…couldn’t afford them on top of the diabetes meds and stuff anyway….i guess i just try to keep my suffering as quiet as i can and do the best i can each day…some days are okay…others are just to be got through….as i don’t deal very well with the anger that stupid thoughtless comments cause, i guess my best defense is avoidance.
I am the mother of a 21 year old son who has been sick with CFS for 3 years. He is the strongest person I know, to continue to have the upbeat attitude he has, even after missing over 100 days of school his senior year, and being unable to attend college because of his health. Besides seeing him suffer, the hardest thing about this experience is the cruel comments from doctors and other people, even teachers. I keep telling myself that they aren’t “living” the disease like we are every day, that they don’t see the suffering and pain that my son goes through, and how badly he just wants to get back to a “normal” life. Every negative comment is like a kick in the stomach when you’re down. I have vowed that people’s misunderstanding will not make me bitter, just more empathetic to others who deal with hard things I may not understand.
I don’t tell anyone anymore either. People are on a ‘need to know’ with my fibro. When people tell me I can’t be in as much pain as them, I just shut up. I figure it doesn’t matter anyway and there is no way I will ever prove anything to them. I usually just change the subject or pretend I forgot something so I can leave.
I generally don’t tell people, unless I’m convinced that even if they CAN’T understand, at least they’ll give me the benefit of the doubt. The name, Chronic Fatigue Syndrome, is just asking for a rebuttal.
I’ve had my doctor respond, “Everybody’s tired!”
I’ve spent my life measuring energy for the sole purpose of getting as much of my work done as I can – there’s nothing left for fun and I resent that. Having someone tell me I’m lazy only adds insult to injury.
For people who make a hasty diagnosis of laziness, I would like to ask them how they can know so much about me – without the first blood test, family history, etc. Most of them hardly even know my name.
And just how much do they know about CFS to know when someone does or does not have it? The fact is, most of those people fly in the face of research and simply decide it doesn’t exist.
I am a hairdresser and have a coworker that just doesnt have a clue..Im 41 and she always tells me Im too young to act like I do and feel so bad. The other day she told me when she hurts like I do, she just hops in the shower and feels much better. God bless the ignorant for they know not when to shut up.
After numerous visits from DR n ER’s and several blood tests a DR whom I am so thankful gave me a diagnoses. I got the comments from friends n families which made me feel crazy. I am so thankful 2 my young children for helping me out on days n weeks when I was unable to get out of bed.
Thankful for a husband who went to every appt wit me n got educated. This month he went 2 my appt 2 the Rhematologist n when she handed him the pamphlet ” coping n help love one with FM / CFS he broke down n cry. He said he never knew I experienced so much pain n went through so much. I had to drop out of college online due to pain . Fatigue n mostly brain fog. I was unable to work either n got laid off.
I m coping with the depression, fatigue, brain fog n so much more.
I still get DR’s who snicker behind my back n one who thinks she can cure me, but all I do is smile n say its all in the hands of God. I m more appreciative of the hours or half a day of feeling gud. Gentle hugs 2 everyone n remember there are n will always be ignorant people in this world cause its one of our many flaws. God bless everyone n happy holidays.
I was told I was trying to milk the system when I asked if there was new treatments for Chronic Fatigue Syndrome. I went to a rheumatologist in Boca Raton and he didn’t believe in it. Since my regular doctor retired, I can’t find anyone to treat this condition. Now I possibly have Fibromyalgia because I wake up in pain every morning. I can’t sleep properly. I wish I didn’t have this problem and the last thing I want to do is go on disability because I enjoy working. The doctor I originally saw specialized in this problem. She was the pioneer in this research. I just want to feel good again. I have not felt like myself since I was 23 and how I am 41.
The most difficult and hurtful situation has been my own family not believing me and thus not being a support system for me…my parents (in particular my mom) and my siblings just thought I was being a hyperchondriac…decided I was doing it to get attention, I was labeled as lazy. Fortunately my husband has always believed me, but couldn’t really relate or understand, thus he hasn’t always known how he could be helpful to me. I have been sick for 28 years…there is so much more information and support out there now, but it’s still difficult. In the beginning I’d try to explain my condition to people, but I barely understood it myself…so many “seemingly” benign symptoms (but when put all together… so debilitating). So many doctors didn’t have answers and would put it back on me. I would question myself…is this in my head? I knew it wasn’t, but when so many are telling you something different it is so hard. The illness itself is so devastating…trying to just get through each day, but then when you have to do it w/o any support from family, friends, the medical community…it’s the case of “insult to injury”.
I am finally beginning to stand up for myself…if someone is not a support to me (whether spiritually, emotionally, or physically) they have very limited access to me. I do not have enough energy to expend on those who drag me down. I worried too much and for too long about trying to appease others, trying to meet their needs, trying to keep up with them, I CARED TOO MUCH about whether or not someone believed me or understood me…too much energy (that I did not have) was expended on this…the illness has gotten so much worse that I have had to make some hard decisions….I am restructuring how I live.
For anyone to be in my life at this point they have to show respect and take a true interest in my reality…if they can’t or don’t…well, you get the picture.
Some of the “smartest” people can be so stupid! Being rude and inconsiderate of others is a reflections of their lack of good manners (a rarity these days). Most of the time I ignore them, they are not worth the stress. If I do respond now, I just share a few statistics, “More and more people are getting it, even though it isn’t contageous. Almost 1 out of 50 now have it. So, maybe when YOU, or someone you love gets it, you’ll ‘get it’. ” I used to never wish this on anyone, but after having to put up with so many rude insults and ridicule, especially in this town .. I still don’t WISH it on anyone, but I don’t care either. I’m just showing them how much courtesy they are showing me.
Nancy, I hope you let the program producers know. And don’t forget to let the advertisers on that show know. That hits the show in the pocketbook.
I told someone that I didn’t have the arm strength to hold up a blow dryer to make my hair nice. She told me I was “just going to have to develop it” like it was just laziness on my part. That hurt.
While visiting my parents in another state, after driving hundreds of miles the day before, I woke up as usual, needing a half-hour or so of little light, little noise and just sitting while my medication kicked in and I tried to will the brain fog away with a cup of coffee. The second I got up, several relatives started asking me questions about plans for the day and making a bunch of noise. I explained how I needed to take care of myself and asked for my time. And of all people, my mother, who seemed to understand fibromyalgia after I gave her a printed explanation of it, and have talked to her about much in the 25 years I’ve had it, said, “well, look who got up on the wrong side of the bed,” and then laughed at me. Those kinds of things are very frustrating and hurtful, especially coming from someone so close. I know it’s hard for them to understand, but all I can do is try to educate them and take care of myself. My children get it, my boyfriend gets it. What more could I ask for?