I Would Run Away From Home...-Chronic Fatigue Research France

I Would Run Away From Home, But I Have To Take My Body With Me

By: Anne-Marie Vidal

It seems that the above title would make a great Country and Western Song with just the right amount of blues and pathos thrown into the melody and the lyrics. And if you have Fibromyalgia, Multiple Chemical Sensitivity Syndrome or Chronic Fatigue and Immune Dysfunction, you have no lack of blues and everyday can be a tragic comedy.

Every once in awhile someone says to me, “I wish I had your energy.” Or “You must have better health than most of us (with FMS or CFIDS) to do what you do.” Hmmh???? Remind you of anything, maybe the chorus of “But You look So Good?” That remark can either depress or anger or you depending on your mood that day. I am just another patient, who struggles through a multitude of pains, neurological problems and immune system troubles from one day to the next.

I take 21 medications a day to manage my FMS, CFIDS, allergies, asthma, epilepsy, GERD (gastroesophegeal reflux disease), arthritis, and Irritable Bowel syndrome. Sometimes when I get dressed, I look like the Mummy who terrorized Brooklyn after the application of wrist supports, an ankle brace, a rib belt, back support and a knee brace. On bad days I add a neck collar, on good days, I conveniently forget the support garments I need and leave my ribs and back on their own.

Yet, I advocate when I can. I am acutely conscious that FMS-CFIDS–MCS-GWS awareness day is around the corner and I have mailed my letters to assemblywoman, states senator, a sleepy congressman, and Senators who have been a legislative disappointment. I am equally and painfully aware that I have done this since my diagnosis in 1997 and that while some of the elected representatives have changed, their lack of a response has not.

Equally painful is the feeling that not much in the community of patients has changed other than we continue to get sicker. For the most part, patients are isolated or feel that way and feeling that way makes it a fact. We can help one another by advocating and we can help one another by sharing families that disbelieve. As a first step in education I would like to propose a “Write A Family Who Disbelieves Day.” Let it occur in May with Awareness activities, but ask a friend to write your family while you agree to write a letter about FMS, CFIDS or MCS to another friend’s disbelieving and misunderstanding relatives.

We cannot cure Fibromyalgia, Chronic Fatigue and Immune Dysfunction, or Multiple Chemical Sensitivity but we can cure AIYH ism. You are familiar with “All in your head syndrome.” It afflicts hundreds of under-educated medical professionals, ill-informed family members, and medically untutored lay people. Those are the people who feel if they can’t see it, it must not exist. Hopefully these people are never exposed to pollution are chemical warfare, because further damage could occur to their brain cells. These are the people you can recognize by their symptoms, usual remarks like: “You need to think positive.” “You are indulging whims.” “Lots of people feel better when they get a good night’s sleep.” If you try to feel better, you will feel better,” The only known treatment for AIYH ism is education, and we as patients can provide that to those afflicted with this disease.