How Can We Look So Good But Feel So Bad with CFS & Fibromyalgia?

I’ve talked about this subject before but it is something that comes up so often in conversations, I think it’s worth writing about again.  One of the big phenomenons surrounding ME/CFS & Fibromyalgia is the fact that we can look so healthy – so normal – but yet be so disabled and feel so crappy.  Our looks don’t fit with how we truly feel.  I think too if you have an upbeat personality, as I tend to have most of the time, it makes it even harder for people to realize and comprehend the severity of how sick I truly am.

I went in today around 3 p.m. to pick up a prescription and I told the pharmacist where I work that it’s a hot day outside but I was in bed all day so I didn’t realize how warm it truly was outside.  I wasn’t complaining or anything – I was just stating a fact.  I was up most of the night due to the sleeping problems I have from ME/CFS so it was after 5 a.m. and I finally gave in and took sleeping meds so I could get some sleep.  The pharmacist told me that if it wasn’t for the fact that he was my pharmacist and saw my medications, and knew the things about my health that I have shared, he would never guess to look at me that I am as sick as I am.  He told me today that I look so healthy and so happy. 

It does feel good to hear that because I don’t want to walk around looking sick because when I do look sick, it draws attention to me that I really don’t like.  Over the past year I’ve lost weight, I am now tan, and that makes me look even healthier so I look like the perfect picture of a healthy person.  But I’m not.  My body’s not no matter how hard I try. 

When I am having the really bad days, people can tell I am sick – especially those who know me – and my eyes will give it away.  My eyes tend to get very small and squinty and puffy and my voice will change.  My husband just told me today that when I am having a bad spell for a while he will call my cell phone answering machine just to listen to my voice because he misses the perkiness in it when I’m sick.  Isn’t that sad?  It’s like a slow death for family.  My son will also notice immediately when I’m not well just by my voice. 

People often think that we are complaining when we say others say we look good when we are feeling bad.  We’re not complaining – we just know that people have a hard time believing that in our illnesses anyway, then when you take the looks into consideration, it’s like a double whammy against us. 

What is the one thing we hear as soon as someone finds out we are sick with ME/CFS and/or Fibromyalgia?  “You don’t look sick”.  When someone says that it is as if they are totally disregarding and disbelieving the fact that you are truly ill.  Everything in life is not in black and white and these illnesses are definitely not easy to define. 

After the pharmacist told me how healthy I looked, he said that my positive attitude probably helps me some and that I am to keep smiling!  It did feel nice to get the compliment.  What woman doesn’t want to be told she looks good?

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Comments

  1. I have FM/CFS/IBS. Looking healthy sometimes is a curse because no one realizes how sick i am. I try so hard to stay positive because i know it helps my overall healt. The pain i experience is so bad most everyday.

  2. My voice changes too. My boss and friends at work say they can hear it in my voice when I am feeling HORRIBLE. But, what I don’t think they know is that I feel BAD when my voice sounds normal.

  3. While I totally get what you’re saying, I often have very visible signs of having CFS and Fibro. Often have people look at me with alarm and say, “Are you feeling okay?” This often happens with people that didn’t even know I have these syndromes. Sometimes I don’t realize I look sick.

    When I am having a flare, I may have any or all of the following: puffy eyes, dark circles under my eyes, red eyes, runny noise, head sweats (enough to saturate my hair), clamminess.

    In addition I have behavior changes that are observable by others. For example: Sore muscles can make me walk somewhat differently, a feeling of pressure on my head, face and shoulders (very different from sinus pressure) which makes me behave sluggishly, “zoning out” or being easily distracted from brain fog.

    Then there are times when I look and seem normal. My biggest problem there is that my friends and family want me to do more than I know I can do, and seem annoyed when I decline. But I have to protect myself by saying no sometimes.

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