Those of us who have fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) are all in this together, right? No one else really understands what we go through, and I truly believe that the best thing we can do is learn from each other.
That's why it really bothers me when I see someone with FMS or ME/CFS take a defensive attitude toward other people with it. I see it most when someone who's severely disabled starts to question whether someone not as badly disabled really has the condition. I've seen biting comments like, "I certainly can't do all those things! Are you sure you have FMS?" or "If you're not bedridden, I don't think you really have ME/CFS."
Believe me, I understand how hard it is to be so disabled as to stop functioning. I've been there. In the last year and a half I've become a lot more functional, but before that I spent a lot of days (and some weeks) on the couch, unable to do anything at all. Even on my best days, I was only about 30% functional. I'm a lot better now because I've been fortunate enough to find a treatment regimen that works for me. I understand the desperation of searching for something that helps.
What I don't understand is the apparent resentment some people with severe cases have toward people with less severe cases. In my opinion, those of us who've been able to improve offer the best hope for those who haven't. Case in point: it was in my forum here that someone who'd greatly improved mentioned rhodiola rosea -- something I'd never heard of. I researched it and tried it, and it's been a major part of my improvement.
I've got a pretty thick skin, but it does hurt when someone gives me the "are you sure you're sick?" line. We've all faced questions about the reality of our illness, from friends and family, from doctors, and even from ourselves. All of us, no matter our current state of disability, need to support each other and stop this questioning in our own company.
I ask of you, if you're ever feeling negatively about someone with FMS or ME/CFS because they're so much better off than you are, stop yourself before you slam them with "are you sure you're really sick?" You don't know what it's taken them to get where they are, and your resentment of their ability might cost you not only an understanding friend, but a chance to learn from what they've been through.
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Wow. I knew there was a lot of discrimination and, well, judging, of people with fibromyalgia and chronic fatigue syndrome from those who don’t believe their “real” diseases. I was clueless that there was that kind of judging even within the CFS and FMS communities.
I totally think you’re right — hearing that someone is getting better (or at least more functional) is inspiring to me. It gives me hope that someday *I* might get better and/or more functional.
I wouldn’t like to think that I would ever judge or criticize someone for being able to do more than me, or for being stronger than I. My hope is that one day there will be a cure for these dreadful conditions that I and many others most suffer with daily.
thank you so much for writing this, adrienne. as someone who inhabits many demographic categories, i have continually been accused of not being enough: as a bisexual person, i’m not queer enough; as a woman of color, i’m not brown enough; as a survivor of sexual assault, i’m not feminist enough; as a person who suffers from depression and cfs i’m not disabled enough. i’ve had enough of these insensitive comments. judgemental words do not help me, they hurt me when all i’m trying to do is live my life on my own terms and allow others to do the same.
I think it’s part of the grief process – it’s part of being angry. I don’t think it’s right at all and it really bothers me to see that happen.
The other thing that bothers me is when someone is trying to focus on the positive things about life to help them cope better — and another person with the illness criticizes them for trying to stay positive.
Trying to stay positive and keep things in perspective is a major coping mechanism for me. I’m realistic about things, too. I hate having limitations. I hate being in pain. I hate being so tired I just want to drop. It worries me, it frightens me and I get sad and angry at times.
That’s exactly why there are times I want to focus on other things in life. Just to keep on “gettin’ by.” Keep on keepin’ on.
I am so relieved by this post Adrienne! I have only recently ventured into seeking out support from other sufferers recently and to be honest I can’t help but feel somedays that my saving grace, my mobility, the ability hold my job (albeit reduced hours) has been from being removed from the community. Being able to focus on really simple goals like can I get through a yoga class, hydrotherapy and 4 days of work!? If so I celebrate. Being so Type A means I need to feel progress or fall into depression and then the horrible cycle begins. I went through a bad phase earlier this year where 6mths of TOO MUCH led to 4 mths of not much at all, to now trying to get back into a sense of normality – the negativity in some of the community forums has been more of a hindrance than a help at times. So all I can say is to others – if you achieved something this week, today, this month that you couldn’t before, CELEBRATE, it really motivates you to set a new goal.
It’s a situation I’ve personally experienced. A friend with long-term ME/CFS had become quite house-bound, however had an incredible husband and great family support. Before I became ill myself with rheumatoid arthritis and fibromyalgia, I’d also been there a lot to give her lots of physical and emotional support.
When I was diagnosed, I was working full-time, had been unwell, and lacking any family support, had to ‘just get on with it’. Litle did I know that within 12 months, I wouldn’t be able to work myself.
But as my illness became more debilitating, I couldn’t support my friend quite as much. I was in so much pain that I couldn’t run errands or look after her daughter quite so much and she became resentful. Never did I get quite the same level of support back that I’d given.
As I worked through my anger/shock and grief of the diagnosis with a counsellor, I became more able to visualise a way back to some degree of normalcy. It took 2 years and lots of baby steps to learn how to manage my ill-health, but I eventually went back to work part-time.
Several times, she made comments about how I ‘didn’t understand her situation’ and that I ‘must have a mild version’ of my conditions (when in fact both were pretty agressive’. She often said quite wistfully, ‘I don’t know how you do it, you’re always so positive.’ It was almost accusational.
I think she was right though: after initially falling apart emotionally, I got my serenity back and started to accept my situation and never one to back away from a challenge, decided to work with my RA/fibro rather than fight it. It meant a career change and a very different way of working, but with no family nearby and limited support from my friends, there was no one else to depend on.
I’ve been able to get most of my life back, albeit in a much more limited way. My friend, however, has sunk into depression and panic attacks. I feel for her, and want to support her as much as I can, but she drains me of my energy (what little I have of it). So I’ve had to limit how much time I can spend with her, and that makes me feel like I’m letting her down.
Is it true that you can facilitate someone’s inability to deal with their illness? I don’t know. But I have a battle on my hands to keep my head above water, and I see my friend take support from everyone around her but still sit in a dark place.
I wish I knew how to support her more, but help her to move out of her depressed state. It’s horrible to not know how.
As I’ve gotten older, I’ve noticed more understanding from my friends. The few that have stuck with me through my fibromyalgia. I’ve even felt jealous of those with less severe cases, I’m only human. I hope that I haven’t let it show.
Keeping friends is hard it takes effort, when one of our friends becomes ill or has more on their plate than usual perhaps it is normal to revert to the childish feelings of being left out. The important thing is to push the feelings back and try to be there for your friend. If you don’t have the energy or feel to ill to do anything more a phone call saying “I understand and I am keeping you in my thoughts is the least we can do”
My best friend has been going through a lot with her husbands illness, and her own depression. I wish I could take her hand and fix everthing. But all I can do is call her and check on her and once in a blue moon drive over to her house and help her laugh. I tell her I don’t care if we just sit around all day I don’t need to be entertained.
We have a giggle and I know that at least for a day she was smiling. I can’t fix everyday but once in a while maybe I can fix one.
I don’t know where I was going with this. I guess I was just trying to say of all the things we have to push ourselves to do maintaining our friendships should be at the top of the list. Forget the dishes, the wash and all the rest. It will be there later, friends maybe not.
Dear Adrienne,
Myself, with Fibromyalgia, I have only witnessed the opposite attitude in the past. I have two older sisters, one with Rhuematoid-Arthritis and the other one with Osteo-Arthritis (which I have also)and for the longest time my sister with Rhuematoid-Arthritis could not understand why I couldnt work anymore, why I had such a hard time getting out of bed and why I couldnt do daily functions as well as her. And my other sister (the oldest) kept telling me that she had similuar symptoms and could not understand why I was in worse shape then her. Not until after I was put on Social Security Disability did either of my sisters take my illness seriously. It took someone else to say.. “She’s really sick and not capable of functioning like others to work… ect… Now my oldest sister with Osteo-Arthritis, was just diagnosed with “Fibromyalgia” as well. She can still work (unlike myself) but she had to switch jobs because she could not do the work she was previously doing. She has a hard time sleeping now… ect.. Some of her symptoms are very much like mine.. when I was first diagnosed with Fibromyalgia two years ago. She now understands what I’m going through… but also at the same time understands that her symptoms are not as severe as mine where they have disabled me. And she respects that fact and does not make hurtfull comments to me anymore. She understands the whole thing of “Fibromyalgia”.. and how it affects everyone differently.. and even if your symptoms are not as severe as others.. you still respect them and what they are going through and that “Fibromyalgia” with anyone is an awfull chronic illness to have to go through whether you have strong symptoms or mild symptoms… you have “Fibromyalgia” just the same.
Dee
I have seen the coments that you mention ~ and I really have a hard time wrapping my brain around the thought that people compare their illnesses this way !
I have a Severe case of FMS/CFS, where as My father has a Very Mild case. His was pretty severe for a couple years, but he seemed to go into a ” remission ” for a while. After his last surgery for PAD his FMS kicked back in, and has yet to let up . Although he’s never had to take prescription meds for th FMS (luckily !).
I would NEVER dream of saying ” You must not have FMS” because you don’t take Meds for it . I’m just very thankful that he has never suffered as badly as I have ! I’m also hopeful that one day I might experience a ” remission ” .
Dear Adrienne
I really like your about.com Fibromyalgia & CFS section. There is a whole lot of useful info and overview here. I used to see myself as only a Chronic Fatigue Syndrome sufferer but I am realizing gradually that the Fibro symtoms have been coming as well. F.x. if I drink two cups of coffee a day . . itīs all there: pain in my hands, shoulders and tummy . . the list goes on. I try to stay with 1 cup per day because itīs one of the very few luxuries I have left, but I am realizing itīs probably not good for me at all. I have been considering Matcha instead of coffee as I have learned there are some great anti-oxidant benefits. Will be looking into that. About the resentment issues you talk about. . I guess itīs all VERY complicated for us CFS/ME/Fibro people. How much control do we have? I f.x. live in the work-addiction society (the most honest definition I believe) Iceland. All around me are people fighting for approval as enablers. Well, I have to justify a lot, who I am. . why I am not paying my depts, why I am on a social benefits, why I am in my bed at strange hours. . a healthy, able-looking and handsome male in my early forties, . . explaining a lot the time, why I am not looking ill!! It seems to work alright most of the time, but the fact is that I have lost relationship to most of my friends and relatives and. . a lot of my confidence. People hear what I am saying but they donīt relate to it, quickly get fed up with it – and donīt show up anymore. And . . I tend to isolate. I used to be a sparkling and happy personality but now I am mostly a lone stranger. . everything is soooooo paradoxical. I wonder (with some years, new-virus infections and brain-fog) if I will be one of those resenting, nagging people. hmmm or. worse . . maybe I am NOW
But dear Adrienne, You mention rhodiola rosea and that it has helped. Since, I have learned that thereīs a huge difference in quality of supplements, Iīd really like to ask you what kinds of rhodiola rosea you have been taking. Which would you recommend. Love & kindness from the North
Gisli,
I have heard a lot about needing to by expensive, high-quality supplements, but to be honest I buy the cheap stuff at the grocery store … or in the case of rhodiola, the cheapest brand at the supplement store. I’ve had great luck with the cheap stuff, so I’m sticking to it!
I actually just got diagnosed with Fibromyalgia and I kind thought the same way, only a little backwards. I wasn’t sure if I actually -did- have it because I’ve been living with the pain for so many years that I’ve mostly learned how to function. I still have my bad days and my breakdowns, but I wasn’t as debilitated as many of the others that I’ve talked to. So I was wondering if I maybe had something else because I wasn’t as bad as most others. So I’m glad you wrote this article. As far as I know I don’t have any fatigue with this, not usually, but I’ve had it so long I’m not really sure what my energy level should be.
I agree, I was diagnosed in 1998 & have been better & now unfortunately am worse. I have and will continue to try & learn Everything I can how to get better. What worked for me in past is not working now. I admit I do get discouraged by articles in the media giving false claims & hope but come on don’t put down the fellow Fibromyalgia sufferers who are doing well. I was able to work full time for 14 years with help from these success stories who gave me information & my support groups who gave me support. God Bless all of you in your journey to do the best you can because it is a struggle everyday.