deliriumm

Letter To Normals: Getting Others To See Your Symptoms
by Ricky Buchanan *

These are the things that I would like you to understand about me before you judge me

Please understand that being sick doesnt mean Im not still a human being. I have to spend most of my day flat on my back in bed, and I might not seem like great company, but Im still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time Id still like to hear you talk about yours too.

Please understand the difference between happy and healthy. When youve got the flu, you probably feel miserable with it, but Ive been sick for years. I cant be miserable all the time, in fact I work hard at not being miserable. So if youre talking to me and I sound happy, it means Im happy. Thats all. I may be tired. I may be in pain. I may be sicker than ever. Please, dont say, Oh, youre sounding better! I am not sounding better, I am sounding happy. If you want to comment on that, youre welcome.

Please understand that being able to stand up for five minutes doesnt necessarily mean that I can stand up for ten minutes, or an hour. Its quite likely that doing that five minutes has exhausted my resources and Ill need to recover. Imagine an athlete after a race. They couldnt repeat that feat right away either. With a lot of diseases youre either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, sitting up, walking, thinking, being sociable and so on it applies to everything. Thats what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. Its quite possible (for me its common) that one day I am able to walk to the park and back, while the next day Ill have trouble getting to the kitchen. Please dont attack me when Im ill by saying, But you did it before! If you want me to do something, ask if I can and Ill tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens, please dont take it personally.

Please understand that getting out and doing things does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldnt you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct if I could do it, I would.

Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now it cant be put off or forgotten just because Im doing something. Fibromyalgia does not forgive.

Please understand that I cant spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesnt mean Im not trying to get better. It doesnt mean Ive given up. Its just how life is when youre dealing with a chronic illness.

If you want to suggest a cure to me, please dont. Its not because I dont appreciate the thought, and its not because I dont want to get well. Its because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then wed know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro. If something worked, we would KNOW.

If after reading that you still want to suggest a cure, then do it, preferably in writing, but dont expect me to rush out and try it. If I havent had it suggested before, Ill take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you people who are not sick for many things.

But most importantly, I need you to understand me.