The Stigma
of Having Fibromyalgia
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,
go-getter...at 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 www.FMS-HELP.com
that can help explain fibromyalgia to people who don't understand:
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 - www.fms-help.com/neuro.htm
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! www.fms-help.com/tshirt.htm
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
What I Use
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-
help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their
families.
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME
HOMEPAGE