The Stigma of Having Fibromyalgia
This was an article I wrote for the December 2005 RemedyFind Fibromyalgia Newsletter at

Have you ever felt frustrated trying to explain Fibromyalgia (FMS) to someone? I sure have! Most of us have heard comments like: "Fibromyalgia…what's that??" or "I get tired too!"  We are often perceived as malingerers, hypochondriacs, complainers or lazy. We have even been the subject of mocking and contempt on TV shows this past year!
Although fibromyalgia has been at epidemic proportions worldwide for several decades now, there is very little understanding in the general public about this chronic invisible illness. Those of us with FMS experience varying levels of pain, energy and mental clarity, which totally confuse the people around us! They can't understand why one day we can accomplish so much, but the next day we are unable to function. We can't plan ahead, because we don't know how we will feel on a given day. This can ruin our social life, because it seems like we are always making excuses.
"Normal" people don't have a clue what we are going through! But I can't be too hard on them, because I used to be one of those "clueless" normal people myself! I recall an incident that happened just before my FMS onset in 1982. I met a young woman who had just started a new job as a librarian. She told me she had not slept at all in 2 weeks. Her eyes were glassy and she seemed stiff like a robot. I thought to myself, "How weird!" I felt a mixture of pity and contempt for her "weakness." Not long after this, I was just like her--suffering with sleep deprivation and fibromyalgia--and then I understood!
For 14 years, I went from doctor to doctor looking for help for my excruciating pain, impossible-to-manage insomnia, biochemical depression, chronic viral illnesses, and severe exhaustion. I lost my full-time job as a legal secretary and could not work at all for 3 years. I couldn't stand for more than 10 or 15 minutes at a time without collapsing. Simple activities such as cooking, doing the dishes, or playing the piano caused weeks of agonizing pain. As the years went on, I was finally able to work part-time, but it was extremely difficult. Finally, in 1996, I got the internet and found many things that helped me function again. This was also the year that I began my web site for fibromyalgia sufferers.
Although my condition is now well managed, I still have limitations. The trouble is....I look perfectly normal! When I am functioning, I usually do so at an astonishing level. I'm a busy piano and guitar teacher with a lot of wonderful students. I play the piano for my church and I'm involved in my community. In fact, I have yet to meet a person with FMS who wasn't a high achieving, Type A, least until their illness struck!
I find myself pushing past obstacles and barriers that would stop a normal person. I have learned to be this way because what is easy for a healthy person to do is a Herculean task for me. So I try harder, but don't let anyone (except my husband) know how difficult it is for me. My husband commented recently that I "wear a mask" in public and don't let people see how bad I really feel. Well, I gave his comment some thought and decided to be kind to those around me and keep my mask on….ha! Seriously, I don't know how I could deal with my students if I looked as bad as I felt sometimes!
When my sleep function is under control with meds, I feel almost normal. I say "almost" because after 23 years without "natural" sleep, I don't know what feeling normal is anymore. When my sleep cycle goes off track for unknown reasons, I feel awful (pain, fatigue, fibro fog) but have to keep functioning because of commitments I made when I had energy and said, "Sure! No problem! I can do that!"
Lately my husband has been helping me whittle down my commitments to a manageable level. I am very grateful for his help, because I'm a person who likes to say "YES," and I always have many creative ideas to add even more stress to my life! My husband understands my FMS and has been supportive of me and protective of my energy levels. However, at times my limitations are disappointing to him--such as this past weekend when I wasn't able to make a 4-hour trip with him to go to a cousin's wedding. I still find travel extremely exhausting mentally and physically with recovery time needed for quite awhile afterwards. How grateful I am for an understanding spouse!
I really can't complain too much about my fibromyalgia anymore, since I am 95 percent improved from how I was, but I still have enough symptoms to keep me sympathizing with other sufferers. Below are some resources at that can help explain fibromyalgia to people who don't understand:
My Name is Fibromyalgia by Terri Been  - a classic article!
Marly Silverman of P.A.N.D.O.R.A. has written some great paragraphs on what it's like to have a neuroendocrineimmune disorder -
Candy Morris' Fibromyalgia T-shirts with a comprehensive definition of fibromyalgia on the back. You can wear it to the grocery store and educate people behind you in the checkout line…ha!
I also have a highly intelligent, creative friend with FMS who designed business cards with a short definition of fibromyalgia. They are handy to give to someone who tries to pressure you into taking on something that you just can't do. (My husband says I need to learn "How to say NO, when you want to say YES!")
The best thing we can do to diminish the "stigma" of fibromyalgia is to keep working for more AWARENESS and continue educating people in our lives. We can join in letter writing campaigns or help an organization that is working towards compassionate understanding and research for fibromyalgia.
With Christmas and the holidays here, it's easy to get stressed out emotionally and physically--and we all know that with fibro, STRESS is our worst enemy! There are so many extra activities and even unresolved emotional issues that surface when families are together for the holidays. We may also tend to put others first to the point where we endanger our own health and well-being! But this year, let's try to take good care of OURSELVES and accept our limitations!
Breathe in, breathe out…RELAX!!!....ahhhh! Now, doesn't that feel a little better?
Wishing you and your loved ones a peaceful Christmas season and a hope-filled New Year!
Dominie Soo Bush

100 Tips for Coping with Fibromyalgia & Insomnia

  My Fibromyalgia Story

  My Chronic Fatigue Story

  My Insomnia Story

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II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God."  Visit Dominie's FMS/CFIDS Homepage at www.fms- for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.

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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought.  This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.