‘But You Don’t Look Sick’: What Does ‘Sick’ Look Like in Fibromyalgia?

‘But You Don’t Look Sick’:  What Does ‘Sick’ Look Like in Fibromyalgia?
Boy, if we had a nickel for every time we heard this, we would be wealthy! This is why they call fibromyalgia an invisible illness; because looking at us from the outside only, you can't always tell. Our smile hides our pain so often. What DOES sick look like? We are used to sick people LOOKING sick - pale, thin, lethargic. We look like that a lot of the time, but you'll probably never see it. With a little makeup, and a lot of grit and determination, we look pretty good on the outside. We tend to push ourselves out, so most of the time people only SEE us when we're feeling pretty good -  otherwise we hide at home. It's like a woman who is pregnant. She may not look pregnant, but there are changes going on in her body; she senses them and finds them hard to describe at times. She is frequently tired and nauseous, smells really bother her, and her moods can be all over the place. Most of our symptoms are also hidden and not apparent to the people around us. We experience varying degrees of pain, mood shifts, indescribable fatigue, and unrefreshed sleep, just to mention a few. I have to psych myself up when I go out. I put on some makeup, fix my hair, and basically just suck it up. Most of the time, unless you really know me, you might think I am tired because I would not look sick to you. That's the magic of our public persona. We put a lot of effort to appear "normal" when we are out and about or on the job. Because we might not have understood the struggle ourselves until our illnesses hit, we know that unless others are touched by a chronic illness they can’t fully understand. While we look fine on the outside, on the inside we are falling apart at the seams. And it really makes us feel isolated. Fibromyalgia is known as an "invisible disease."
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  1. Darlene says:

    While fibromyalgia isn’t a fatal disease it is debilitating especially as the years go by. It ruins my life because there are so many days that I can’t suck it up and I live an isolated life. I’m alone and some days can’t make it to work, can’t run errands, and can’t socialize. The other effects of aging coupled with fibro symptoms get really bad and no one understands except maybe sort of intellectually.

    • Ivona says:

      I became completely isolated. I use to have friends and social life. Not anymore. It’s so difficult to talk to them about ” what’s wrong with me” I feel like I keep making excuses . I never know what state I will be.. I feel they are judging me and I have a feeling that most of them don’t beleive me.I can’t make any plants because of it. It’s easier then try to explain why I won’t be able to make it. I am afraid to go to public places because “There maybe music, sounds or someone will be wearing parfumes or there is febreeze plug in, or scented candles”. So it’s easier staying home in controlled environment. And yes, there are days when it’s difficult to even talk…

      • Robin Dix says:

        Ivona, I hear your pain and frustration and I totally get it. Perhaps you can choose 2 friends and invite them over for an hour, with the purpose of educating them and tell them you value their friendship. Explain what you did in your post, and ask them to continue asking you to do things, with the understanding that you may need to back out at the last minute. Ask them not to take it personally, as your desire is truly to do things with them and enjoy their company.

      • John Paul says:

        It may not seem much but you have support, understanding and friendship with more people than you can imagine who share your pain out here.

    • Kelly says:

      I so understand. Since I’ve gotten older the symptoms are worse. I do have good days tho…I try to keep my mind on positive things! I spend so much more time in my house, people think I’m a recluse!

  2. Katerina says:

    How many times I have heard ” you look to good to be sick ! This is only in Your Head ! You are hypochondriac!” I did stop to Talk about its just waste of my energy ! I have notice that when it hurts the most that I can’t even sleep it helps me to go for walk ! I take my dog and we are walking to the point I barely move my legs and in many cases its help me to fall in sleep for about 4-5 hours !

    • Robin Dix says:

      Katerina, people can be cruel when they make cutting remarks out of ignorance. I’m glad you have your dog and can walk him when you can’t sleep due to pain. Hang in ther, you’re not alone!

      • Katerina says:

        Believe or not but my dog is my savior ! If I may advise to all who suffer that the dog can be the greatest Service Dog for our disease . She knows when I suffer the most she lays on my most hurting parts of my body after walking she keeps me enaugh comfortable so I can fall a sleep .

        • Robin Dix says:

          My dog is the same way. I know of people who’s cats are sensitive to their pain and lay with them as well, such a blessing!

  3. John-Paul Higgerson says:

    So true, I have fibromyalgia to live with as well as Localised Nodular Myositis and Chronic Pain and just because I am not crawling round every one thinks I am fine. Stay strong and make the most of the better days without overdoing things!

    • Robin Dix says:

      I hear your frustration and unfortunately if someone doesn’t have it, they don’t get it. Fortunately there are a lot of support groups online. Do you have any support?

  4. Shy says:

    I’ve known I was a lesbian since I was a young teen and I have gotten the “you don’t look like a lesbian” comment when I was younger. Even now that my appearance is less feminine, people often don’t want to believe anyone can be anything other than the default (healthy, straight, what have you)… It is exceptionally hard for people who don’t engage with people outside of their perceptions or people who challenge their deeply held stereotypes. For them, their only experience with a chronically ill person may be their grandparent having been terminally ill. Their only conception of a disabled person may be in a wheelchair or blind (ironic since not everyone with these disabilities is “completely disabled”).

    It is exahusting to have to live up to other’s expectations of what looks “sick enough” to be taken seriously. I look healthy, until I am almost paralyzed in bed from a CFS or ME crash and have to make the decision to throw myself onto the floor to pee or wait it out long enough to be able to make it to the bathroom. Most 24 year olds don’t have to make this kind of decision unless they catch swine flu.

    There’s a misguided conception that if you “look well enough to me” you should be able to force your way through- “everyone has pain right? What makes you so special” “I had a migraine last year so I know how you feel!” “Sometimes I get tired after partying all night so I sleep in on sundays until 2pm” “I wish I could take off work and lay in bed all day everyday” – they don’t seem to get that in our society we have to put on a performance… If we look ill we get babied and infantilized, told how strong we are, asked if we have cancer or will be considered a downer, if we don’t look ill we are presumed fine and fully functional or some other aspect of us is blamed- lazy, fat, weakness. If we looked ill we would get sent home from work if we are able to work, our friends would tell us not to push ourselves to see them- without mentioning if we don’t make the effort they will stop being our friends many times.

    Part of it is people who don’t know much about disability themselves feel like disabled and chronically ill people get some kind of reward from being in such a state. “You get good drugs” or “Accomodations/Affirmative Action/Benefits” of some kind that makes us exactly like them, but rewarded so our life is “easier” – it’s such a selfish ignorant and narrow minded view of the world. Often people who view the world like this think all minorities feel entitled and are getting special treatment, not realizing that it is the otherway around entirely! But I have noticed even the most progressive of people can have these mindsets about disabled people. I wish I could blame just capitalism as the source of it all, or “protestant work ethic,” but sometimes it is really just that the person is a jerk!

  5. Pat says:

    I am more sick with fibro as I age. I have also no friends. If I go with my daughter to do some errands or even a movie, I cannot get out of bed the next day. Cant sleep that nite. Its so frustrating and I feel so helpless at 77. Its like a death sentence, very slow. Wish I could accept its pain better.

    • Robin Dix says:

      Pat, my symptoms get worse with age as well. I try to determine ahead of time if the activity will be with the price I’ll pay the next day. So glad you’re a part of this community ??

    • Patricia Greenwood says:

      Pat,I know how u feel.I have just turned 80years and have had fibro. and c.f. for over 20 years.My husband who has always helped me has had strokes and heart attack.He cannot do much to help me now.I miss that so much.We live in a Retirement Village now.Been married 60years. Have home help etc.Still find it hard to accept that my stamina and love of life has been reduced so much!Still I hang in there.

  6. teasha says:

    in the past 2 years all my prolems had been getting worse , like unbearable so i fnally go to dr to find out it’s fibromyalgia . i totally understand the isolation and feeling as if friends and family thinks i’m over exaggerating it’s hard and sucks . i was plnning on looking into roup meetings or something but havent gotten around dto it yet . i have question if anyone knows or has tried different medications til they were more comfy according to pain ??? what is the best tha helps with the fibromyalgia ? i currently take duloxetine , have tried gabapentin it makes me woozie and all shaky , then generic soma . the soma worked great except the groggy stuck feeling . any suggestions also anyone groups known in the seattle area ??

  7. Alejandra says:

    I was in a sever car accident 2 years ago and slowly my symptoms started to worsen. I do have some damage to my spine but it did not explain why i was sick all the time , fatigued, felt pains and aches all over, got numb and tingling in my hands and legs, couldn’t sleep, felt nauseous, loss of appetite and if my husband would gently squeeze my arm or hug me I would cry out in pain. I went to a rheumatologist yeaterday since my primary care thought I had lupus all my symptoms pointed to it as well as a positive ANA test. The doctor asked me a series of questions and checked my joints for swelling which she did not find. She told me she believes I have fibromyalgia. In the past I have thought I did too, but people told me that was a made up disease doctors came up with the name when they don’t know what is wrong with you. Since yesterday I have been researching tirelessly and am beginning to understand this is a real disease with real effects and that I am not crazy, it’s not all in my head or becasue I stress to much or my lack of exercise! I’m not over weight I used to do cross fit and weight lifting I used to jog in the park I was active! Now I can’t do even the simplest things since the accident! I was wondering if anyone had a traumatic accident that then led them down this hell hole?? I’m so glad to have found this sight of real people with real experiences I can relate to all of them!! I’m following up with my primary care to evaluate me and get a proper diagnosis it’s been a long 2 years!!

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