The Invisibility of ME/CFS & Fibromyalgia

I published a picture of myself on this post because it is relevant to what I am about to post.  At work the other day, a customer overheard me talking to another employee when I was explaining why I only work a few hours a week.  I was saying that I have several chronic illnesses and my health won’t allow me to work more than a few hours.  I went on to say that I had chronic fatigue syndrome, fibromyalgia and interstitial cystitis.  The customer, who had just walked into my line said, “Oh my!  You poor dear!  I’m sorry to hear that you have to go through so much.  But I have to say that you look remarkably well for someone who has so many health problems.”

I was flattered by her compliment and appreciated the fact that she thought I looked good, and I don’t like looking sick, which I have been known to do many times over the years.  I have also looked like hell more times than I care to count also and people who know me – really know me – like my family and those who see me all of the time – can tell when I’m having a good day or a bad day.  I’m always told that my eyes show how bad I feel. 

I guess the point I am trying to get at is the same point I’ve been trying to make for years – everyone has this preconceived notion of what “sick” looks like and with invisible illnesses like CFS and FM, we look too healthy.  People can’t grasp how truly sick we are because we look too well, so to many we aren’t “really sick”.   But if you stop and think about it, haven’t you seen:

  • cancer patients who don’t look sick? 
  • MS patients who don’t look sick?
  • AIDS patients who don’t look sick?

A lot of times when we think of cancer and AIDS, we think of people who are terminal, but there are many people with cancer who and AIDS who live.  These are real diseases, these people don’t look sick, but no one questions whether they are sick or not.  As soon as they hear the disease names, we automatically think either sick or dying.  With CFS and Fibromyalgia, we are considered just as sick as someone with cancer and AIDS, but because we may look healthy, society says we’re not really sick.  It’s a cruel double standard we’ve lived with for years.   No, we’re not dying but we will die with these illnesses. 

It was a relief to hear someone say what the customer said to me, but I was extremely shocked by her comment because I’m not used to hearing that.  I am used to having to go into detail because people just don’t grasp that I am very ill.  How many other illnesses do people have to explain why they:

  • can’t work at all or work very few hours?
  • can’t work more than 2 – 3 days in a row?
  • can’t handle stress?
  • can’t exercise at aerobic levels or can’t exercise at all?
  • can’t get out of bed one day but the next day might be able to work?
  • can’t do more than take a shower or wash their hair before collapsing?
  • will collapse after light exertion? 
  • live with constant, excruciating pain?

I could go on and on with the list, but you get where I’m going.  It is only with invisible illnesses like CFS, Fibromyalgia and related diseases that we have to go through all of this crap with society, doctors, employers, friends, families, and everyone over and over again.  It’s a neverending battle that is, pardon the pun, exhausting.  But as exhausting as it is, we have to continue fighting for ourselves.  The only way to make invisible illnesses visible is by sharing, educating, research, and hopefully soon, an answer to what is causing all of this.  I believe we are getting close with the XMRV.  The next year or two ought to straighten out that controversy. 

We don’t have anything to be ashamed about and there is no shame in telling someone you have ME/CFS or Fibromyalgia.  They are REAL illnesses that affect millions of REAL people everyday.  I know that people are sometimes afraid to mention what is wrong with them and I used to be like that because I would worry about what people would think.  But I don’t feel like that anymore.  Knowledge is power and the only way people are going to learn about us is from our stories. 

ME/CFS and Fibromyalgia may be considered invisible illnesses when looking at us from the outside.  But those of us suffering know how very visible and present they are in our lives every minute of every day.

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  1. The thing is while there are still medical professionals who say Fibro is all in our head there is a shame to telling people you have it :0(

  2. THANK YOU! I face the same comments, even from my own father who suffers from chronic pain as to why I do not work. I get it from other family members and friends and strangers, it is exhausting to keep explaining. Will be sharing this!!

  3. dollar - South Afirca says:



  4. Great post Sandy! I remember several occassions of someone saying to me “are you still ill? but you look so well.” and at the time I took it as a compliment too. But the more people say it the more it makes me think, well what do you want a sick person to look like?! I do find it frustrating but I know in my case anyway that it has never been meant with any malice. On the other hand I know someone who had “well you look fine to me” said to them which i’m sure you can appreciate has a different tone to it. I also think if someone had seen me before I got ill, and then saw me now, they would probably think I did look quite sick lol! You are right it is all quite subjective I think! 🙂 x

  5. Loretta Ayres says:

    Love your post. I had a friend tell me she was so tired of hearing “I am tired and just can’t move today” She said “I look fine and she thinks it is a crock of sh**.” Not that I would ever want to have fibromyalgia but I would like them tow walk a mile in my shoes for just one day. If our friends don’t understand how can others?

  6. Wonderful post! I know you understand when I say I am SOOOOOOO TIRED of people saying “so, are you better now? you look fine”. AARRGGHH!!! I have quit even socializing with some of the women at church because of this. Unfortunately for me, (fortunately for them!) they don’t get it, they don’t understand. They think if I can walk into Church or go to Bible study, I must be fine. After suffering with and dealing with this for 11 years, you find a way to function even with the daily pain. You learn how to use your “energy” and when to rest and when you just can’t. They have no concept of how a trip to the grocery store can put me down for the rest of the day. I try so hard to stay “up” with a positive outlook, and I will say I do pretty well, most of the time. But there are times, like now when it can very hard. I do thank the Lord for my Husband and Children. They always say the same thing, its the look in my eyes that give me away on “bad” days. Even my young Grandchildren have had to grow up learning about chronic pain and that sometimes, “you have to give grammy soft hugs”. Can you tell I am flaring right now? Thanks again for the great article! I will be passing it on!

  7. Thanks. Great post. I’ve had those sorts of comments too, even from family. I also have Fibromyalgia, interstitial cystitis, chronic fatigue, migraines, sleep problems, anxiety etc and find exertion wears me out. But I consider I do well, all things considered. All I ask is for people to acknowledge my limitations, and then I’m fine, or OK not to be fine if neccessary! I have started to say, that the air we breathe is invisible but nobody would deny its existence.

  8. Thanks Sandy, you have finally put into words something I have wanted to for years. Yes we ARE really, really sick. Half the time we do look “NORMAL”. And although this won’t kill us like AIDS, or Cancer….this isn’t something that we would wish on our worst enemy.

  9. tanesha hunter says:

    i know what you mean people look at you like your lying when you tell them how you feel or if you have a good day they bring the 10 bad days up you have had it relay hurts emotionally people ask you how are you and you tell them the first thing out their mouth is you look fine

  10. A great big “HI” to Sandy Robinson!
    Thank you so very much for writing and explaining just how much we have to cope with others’ statements such as you mentioned. Not only do we have to live with pain and chronic fatigue, as well as many other problems, but to have to constantly explain why we look so good is exhausting and something that I am constantly having to do. It is so annoying!
    I am good for a couple of hours in the morning and make sure that I do what I have to do – quickly! Then I need to lay down and that is pretty much it for me for the rest of the day. It is so frustrating, but I accept and cope as best I can.
    I do not need people to constantly query whether or not I am ill or not! That in itself is exhausting. So I tend to stay away from anyone. Only my family and close friends really know how I feel, and even some of them have a hard time believing sometimes.
    They must learn that we are only out and about because we feel that we can at that time, and the rest of the time we are coping at home in bed or wherever. We simply do not go out if we are not feeling up to it, which in my case is the majority of the time. Grrrrr. Ha!
    Thanks again Sandy and I love the haircut!

  11. HI Sandy, I am glad to hear that someone with the same illness as me looks good. All I ever hear from family, friends & strangers is how terrible I look! It gets very dishearting to hear this all the time.

    All the best

  12. Patricia Jones says:

    I wish everyone could read this. I have so many telling me I just need to get a job and that will make it better. Or “but you dont look sick” They just dont understand even the little things like doing dishes or laundry makes the pain out of control. And Im supposed to handle a full time job? I am thankful for the very few (can count on one hand) who understand me enough who can just look at my face and tell im not doing well.

    • Patricia, I realize how hard it can be just to get ordinary daily tasks done. I’ve been on the couch all day today – barely able to get the one load of laundry done I had to do. I think a lot of times people mean well but they don’t realize how what they say is really more hurtful than anything. Their comments don’t help most of the time.

  13. Sandie, That was a great post. I am 58 now and have been sick for 24 yrs. You almost get tired of people tellimg you how good you look when you feel so bad. I have always tried to make myself look as good as I could hoping it would make me feel better. So when people say well you look just great, I always come back with the comment ” that’s what I use Revelon for!!! They laugh but then they look at me like well maybe you are sick. Duh!!!! Do you think!

  14. TaMeisha Elliott says:

    Thank you so much for this article. As soon as I post this comment I am having my husband and children read this article. I go through this often. I have been to so many dr’s in the last 4/5 years and none of them could tell me what was wrong. I am finally getting the help that I so desperately need. I feel that the people that have no real clue of CFS and Fibromyalgia have no idea of what we go through and what we feel. I may look pretty and all made up but that is only because I don’t like walking out of my house looking so bad. I really wish people would at least try to understand that what we have is REAL and we are in PAIN!! I have thought about forming a support group here where I live, we’ll see how that goes. Stay hopeful

    • Hi TaMeisha! I love your name! Please feel free to pass the article on to whomever you think may benefit from reading it. I’m glad to hear you are finally getting some medical help for your CFS and FM. I hope you are able to start a support group – so many people can use a great support system and someone to talk to. Best of luck to you and keep coming back!

  15. My daughter has Fibro & Lupus; I have had RA for 54 years, plus several other chronic illnesses, now at 78, so I can identify with much of what you all are saying.I can also sympathize with your specific disease because of my daughter’s condition. At least mine isn’t invisible anymore, so I don’t have to deal with that as much, but you’d be surprised how many people don’t see the deformed hands and legs–and what does sick look like, anyway? I defy anyone to walk down the street and pick out the people with bad hearts, aneurysms about to burst, brain tumors and other cancers, etc. Heck, Doctors can’t even do that!
    Thanks, Sandy, for your work in the cause of awareness and enlightenment. Someday! I hope in my lifetime. And by the way, my daughter at times looks great, and I do, too, and we both like to be as pretty as we can, all things considered.

  16. Jennifer Roeder says:

    Thank you for posting, Sandy! Wow, did this help me today…I hope it’s ok, I shared this on The Fibromyalgia Fun House.

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