Sometimes I think those of us with Fibromyalgia are considered a special brand of crazy, among invisible diseases. People can understand a food allergy, auto-immune specific issues, even something that they may not have heard of, but is well documented like SLE. People with Fibro seem to have a reputation as lazy and liars. Science can’t tell us why we hurt, why our nervous system has gone haywire or why we are exhausted all the time.

I have read many interesting theories on the subject, but as the age ranges and cases grow in number of sufferers, there seems to be little growth in understanding of the illness and those who fight it. I know Fibro isn’t the only one, but as a writer I have to write from what I know and hope a broader range of people can somehow benefit from the knowledge.
The bigger challenge, I’ve found, is not the strangers I meet each day who might ask, but my own family and friends who seem to have an innate ability to remember me as an active child and forget I am an ill adult. When I confronted my mother for example, she could only tell me “It’s because you look fine, you know, I forget.” That is human; I can accept that, but then half an hour later she’s prodding me to keep going when I am tired.
A guy told me once that being a mother wasn’t what would scare him off, it’s my being ill with something he didn’t know how to take care of, that scared him away from dating me. I was little help in being able to give him anything specific enough to do. Fibro is like an ever melting and reforming snowflake. Each case is different and keeps morphing like some mutated gene through history. Maybe they will discover we are just evolving to take on the rigors of space, but until I’m deemed among the next evolution of humans, I’m helpless to assist those around me with a black and white list.
Doctors aren’t much better either. There are only 3 or 4 centers in the coutnry that are truly qualified to treat Fibromylagia. I have found that many doctors read an article in the AMA or something similar and consider themsleves up-to-date on my illness. I often find doctors don’t know what they are talking about and I am tired of being both a guinea pig and being told I’m foolish, because some treatment of theirs didn’t work. I have been to hollistics, chiropractors, pain specalists, massage therapy, physical therapy, sports medicine, Rheumatologists, family practitioners, as well as a random doctor I saw in a clinic who found the only thing that ever helped, Gabapentin, a drug made originally for controlling epilepsy. However just try to find a doctor who will prescribe it as a preventative instead of as a reactive. I have tried it all. Most of them try to give you narcotics, which to me is a red flag they don’t know about this illness, because it disrupts sleeping issues further and puts you into a vicious cycle of worse pain. Is it auto-immune? Is it caused by bacterial growth on the bones or in the marrow? Is it simply a nervous system gone haywire? No one knows for sure. They do have some treatments, but they’re expensive, not generally covered by any insurance and you have to keep going back for them to one of the few specialty centers. One of them is an IV of the same fluids used to keep bone marrow cells alive for transplant and it leaves you breathing it from every pore for days, smelling like an old can of corn. A neighbor had this treatment and when she got them they seemed to help, but she did have to go back. It’s hard to have a lot of hope in a medical community that doesn’t understand you either.
Our path isn’t the easiest road to travel. Many who suffer from similar diseases don’t understand it. Research is a slim chance in our case. The only way is forward by pushing ourselves further along at every pass, realizing our grace is in our strength and knowing we aren’t alone in all of this. The stories of the two or three years it took to be diagnosed, the fatigue and the pain, put us all in a brother and sisterhood we didn’t want to belong to, but we can use it to make us strong. We can talk with anyone who will listen and we can put our energies into trying to be heard, instead of crying over no one listening. The choice, as with any illness, is the will you have within you, to either keep moving in life the best you can or sitting down and giving up. Yes, there will be times when all you can do is sit down, but choose to get up again, too. It’s been made obvious no one is really fighting for us, so we have to fight for ourselves.
I am 26 years old and I am a fighter.
Jennifer Altherr, Butyoudontlooksick.com, © 2007