Why Can’t We All Just Get Along?

Why Can’t We All Just Get Along?
finding balance   Those of us who suffer from a chronic illness understand the importance of support and friendship. That is why I turned to websites like Fibromyalgia News Today and online support groups. People who are going through the same or similar experiences are valuable, not just for the emotional support and validation but also for information and advice. If you do not have a chronic illness, this may be hard to understand. Most of us have been let down at some point in our lives by the medical community, our family, friends, employers, and co-workers. We've been accused of not being sick at all, or of being lazy and unmotivated. We've been called hypochondriacs and told we use our illness as an excuse to get out of events or other activities. Lately, it seems as if animosity and divisiveness are starting to creep into the comments, not only on this site but also on Facebook and in the support groups. It appears that some of us are letting our pain and misery get the best of us. Some are attacking others for petty and selfish reasons. I am shocked and saddened by what I've been reading lately. Fibromyalgia is awful. None of us would wish this on our worst enemies (well, maybe the worst ones). Frustration, bitterness, and anxiety can make us testy, to say the least, but
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  1. LisaR says:

    Thank you for writing this. I was surprised by all the mean and negative comments towards Lady Gaga after her video. “She can’t really have Fibro if she dances like that.” Etc etc Some people push themselves and can do a lot and then pay the price afterwards (which she apparently does). We should all know better than to judge another Fibro patient or doubt whether they “really” have it. We all have gotten too much of that before!

  2. Gray says:

    I am a solid believer in that no-one can know how a person feels, unless you experience the exact same yourself.

    How can you make assumptions on being a mother, unless you ARE a mother? The same can be said of fathers too of course!

    So many of us feel that our own opinion is the correct one, and that you assume that other people feel the same way.

    Out of the multiple possible symptoms that fibromyalgia sufferers can have, it is only possible to feel what a given person feels unless you ARE that person with the EXACT same symptoms. You will never know, how bad pain is for “other people”. This is why it can take years before you end up with the best possible medication that fits “YOU” the best.

    Don’t you think?

    • Lavinia says:

      Amen to that Yes I agree. Ive had Fibro for 36yrs and have come across some fibro people that can do stuff I never could. So it is as individual as we are in the symptom pain dept

  3. StevefromMA says:

    Years of chronic pain change us and the people around and not in a good way. Trying to keep moving forward with chronic pain is a constant challenge.

  4. jeremy says:

    That’s true Lisa R people with fibro all suffer with pain in there own way I have had fibro for the last 10 years I have been told I am not the same person I need to get a life you need a hobby these are people are friends who I have known for over 40 years who know I have fibro I have tried to explain what I am going through my own sister said its all in the mind I wish I could give it to the ones who say its just a bit of backache and see what the bit of backache feels like .

  5. PollyG. says:

    This was a great column. But here’s the thing~~we all understand the horrors of this condition, but how do we get the general public to know these things? Even our own family members are uninformed. As chronic sufferers of (too many to list) Horrific Things, we can’t tell Normal People every thing that’s happening to us because we feel awful about whining.

    My friends are long gone, because I can’t cook our Every Saturday Huge Meal, clean up, and then go out do something else fun. My own two adult kids couldn’t possibly care less. I haven’t seen my daughter in 6 years, my son in 2 years. Isolation is one of the off~shoots of FM, for sure, but it’s interesting how this occurs.

    So, it seems like the problem is getting through to the public with this information. Pinterest has a lot of great Pins about it~~but again, no one is going to look at them if they don’t have the disorder. How do we do it? Public seminars? Workshops? Written essays, but distributed to whom, and how?

    I don’t the answers to any of this, nor do I have the answers to any of the other thousands of questions I have. But I really do appreciate the chance to speak among understanding people here.

    • Marita Mitchell says:

      Hi Polly
      When the 6 stages of Fibromyalgia appeared on Facebook, I thought about it long and hard. Finally I posted it to all, telling them I was stage 6. The response was overwhelming, kindness, sympathy, care. My very best friend thanked me, because she had never fully understood what I live with. I went back to a dear therapist I had seen a long time ago. I needed to pay someone to listen. His wisdom and kindness will stay with me for a long time. I am virtually house-bound, but I try to complain less, be less angry, and when people phone or visit I am cheerful. It helps me and them. You do need people. Tell them once, very clearly, what your life is like. Ask for what you need, especially from your children. Even though you can’t give meals and partying anymore, you can give love and humour and laughter. Attract people anyway. We really, really need others and have to woo them to our side.
      Bless you, I send sympathy and understanding your way.

    • Billie Fellers says:

      Hi Polly,

      I don’t have the disease, but my best friend and one of my daughters do. I have been reading everything I can, in order to be understanding and helpful for them. This newsletter is a great way to let people learn about and teach others about this frustrating disease. It has been really helpful to hear from other people and their experiences, because the people I care about don’t always want to share. (they think it is whining.)

  6. Marita Mitchell says:

    Hi Carrie
    Oh well said. I am so grateful to you. I have resigned from many support groups because of the meanness I have found there. I stupidly thought those groups would be about kindness, sharing of ideas and support, but instead comments were critical and angry.
    I agree, let’s be kind to others and ourselves. Fibro is hard enough.

    • PollyG. says:

      Thanks, Marita. You are right. It’s been about 7 years since I’ve had any company or visitors at all, except for my stepson and his wife, who have visited twice.

      I blamed everyone else for not caring, but maybe I didn’t do enough to nurture the relationships. Your advice was great. Thanks!

  7. Lisa R says:

    Thank you for this article. I have been told multiple times to quit work by men in white coats. I think what is the difference? I will be in pain at home too and nothing will be there to take my focus off the pain. Just because I can push myself through the most extraordinary pain does not mean I’m not experiencing it. I have done manual work after cracking a rib. Was told to go home and rest for 3 to 6 weeks and went from hospital straight back to work. Also some of us can’t afford to give up work. We have no choice! So to say I don’t have fibro because I work full time is just evil. Like others not even my family understand the level of pain we have. But other sufferers… they should be more supportive and not post nasty comments like these

  8. Lesley says:

    Reading this article at this precise moment in my life is amazing. I have just got out of bed at 4 in the afternoon, I got up earlier but was in so much pain I took two morphine based painkillers and went back to bed until the pain subsided a bit. I switched on my lap top to see whether I had any work offered in the next few days, I hadn’t, and then I saw this. I had been lying in bed thinking of conversations about me being ‘unmotivated’ and ‘lazy’ and worrying about it all. But now I’ve read this, yes it really helps to know I’m not imagining my fibro. Actually I think I’m an incredibly motivated person, and that’s one of the things that makes matter worse! I’m so upset that I can’t achieve what I want to achieve, and that’s not climb Mount Everest or anything, it’s things like keep on top of the housework and do the garden. Keep up the fight everyone and don’t listen to those who have no empathy or knowledge.

  9. Liebran says:

    I don’t bother with support groups. I find them mostly disheartening. My close friends and husband understand. I do what I can for myself. And I don’t whine. I hate that. I try to “get a life” every time I am able. Let the water just roll off your back.

  10. sofia says:

    There is pain , and there is Fibromyalgia pain !!! When somebody is asking me (even medical professionals),what kind of pain is it , I describe it , like if you slam your finger or fingers with a car door, or if you sitting on electrical chear with electricity going through your body. Fibromyalgia symptoms go well beyond pain . How anyone who dos not have it can even begin to understand ? My expectation of people’s understanding is very low . My friends , of which I have very few left, say they understand , but by the change in their behavior , I know they don’t .

  11. Lisa L says:

    Very well written. This is exactly what I needed to read. I agree with Sofia saying there’s pain and there’s fibro pain. I went to the ER for back and chest pain and they sent me home saying that it was muscle pain in my back. I can say for sure that it is not muscle pain and it’s internal. But even some Dr’s think and treat us like it’s in out heads. Hard to convince your own family when the Dr’s don’t believe you. And I, unfortunately have wished this upon people (even family) that have not been understanding even though I don’t really mean it. I have stopped hosting our family gatherings and nobody else has bothered to step in or even offer to trade off. Sad.
    I take one day at a time. Some are good and maybe half not good. I wish everyone for pain free days ahead. And hugs to all!

  12. Janice says:

    I can’t believe you wrote this article when just yesterday I had, yet another, bout of explaining to do with a woman who will not take ‘no’ for an answer. A couple of women I know are constantly asking to ‘go for tea’. No matter what or how many times I explain to them I don’t do social things anymore, it just isn’t satisfactory to them. In other words, as I said to this woman yesterday: “…you believe in tough love? Therefore, I should kick myself and get going”? Her response was ‘yes’.
    There is a time when some relationships need to either change or move on, because it becomes a futile effort to keep from insulting them, yet, still provide some dignity for yourself.
    I’ve reached the point where if I need to go back to bed and stay until 2pm, I do. My motto is: I do what I can, when I can and how I can. Unfortunately, some people just don’t get it, and better yet, they don’t respect when you say no. More saddening, it is usually women who do not accept this of other women.

    But this isolation, though is tough to get through some days, has given me a priceless opportunity to deepen my faith and work on issues (pro-life) that are meaningful. Without FM, I’d probably still be running around like a chicken with no head. It is this that keeps me going.
    As I told this woman, I can’t keep trying to accommodate everyone. I’ve been there done that.
    This Superwoman is retired!

  13. Janice says:

    Obviously my last comment did not go through.
    I won’t repeat myself, but suffice to say, I just experienced this yesterday with a woman I know who will not take ‘no’ for an answer. Always wanting to go for ‘tea’…not when I need groceries or pet food or cut the grass or take a shower!!!
    It is sad when women will not accept what other women are experiencing and, as a result, end up insulting the women who are vulnerable.
    I am happy, now, with my isolation, though some days are tough to get through. It has actually given me a rare opportunity to work on and deepen my faith, plus work on meaningful issues (pro-life). This is what gets me through and it is the best thing that has happened to me. I’d probably be running around like a chicken with no head (airhead) were it not for FM.
    I’m no hero and I’m no Superwoman, and I’m no martyr either. Despite every effort to explain to others as a consideration for them and your friendship, it is important to protect and maintain your own dignity.
    I do what I can, when I can and how I can. If they don’t like it, that is their decision.
    It has taken me 17 years to come to terms with my limitations (which are increasing due to age) and I will no longer let others insult me. Unfortunately, there are times when it is time to move on with certain relationships. Sad, but we were not made to be doormats.
    For those here, I thank you for sharing your stories, especially after the upset I experienced yesterday (and it was my birthday too!!).
    Superwoman is retired! I live in the present moment, not yesterday, not tomorrow, and I give thanks at the end of each day for whatever little thing that happened, at least, what I can remember!!
    Thanks for listening…sorry I rambled on, and on…

  14. Ana Sterling says:

    Reading all these comments I strongly suggest we form a support group ourselves. We all know what we are going thru and a simple HELLO it’s all it takes to feel inclusive and human. Today is a bad day for me…no energy whatsoever! depression is beginning to show…again.

    • Marita Mitchell says:

      Hi Ana
      What a lovely idea. I’m in. I’m so sorry you’ve had a grotty day. I have too. I cry quite a lot when the pain is bad, do you? It feels like catharsis. Sorry about your depression, I also struggled against it for years. Hope you get better too. Sending you a big understanding hug.

      • Ana Sterling says:

        just hearing words of understanding makes me feel so much better. I do not tell family or friends how I truly feel. I keep to myself and hide my pain the best I can. It’s not easy feeling lonely even though I’m surrounded with people.
        Thank you all for your kind words. wishing Janice a happy belated birthday

    • Lisa L says:

      I agree. The last couple of days have been rough with the weather changing so quickly in northern NY. Hopes for better days for all!

  15. I am with you Carrie !! The posts are heartfelt,and truthful. A support group for us is a great idea. In my younger years with fibro,I could still do many things.I think this may be where some of the negative comments come from.In the past,I could never imagine the way I feel now. No need to be judgmental,however. We don’t need salt on our wounds !! Thank you for writing on this topic. Gentle hugs to all !!

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