LETTER TO NORMALS
Having LUPUS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... 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 in considerable pain and exhaustion, and if you visit I probably dont seem like much fun to be with, 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 I'd still like to hear you talk about yours too.
-Please understand the difference between "happy" and "healthy" .When you've 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 you're talking to me and I sound happy, it means I'm happy. That's all. It doesnt mean that Im not in a lot of pain, or extremely tired, or that Im getting better, or any of those things. Please, dont say, "Oh, youre sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
-Similarly, please understand that many of my symptoms arent always visible to people who dont know me well. So if you see me and I look well, this doesnt mean Im not in pain, or exhausted or too shaky to write or sometimes even move, or havent lost sensation, or am not having heart problems etc. Please dont say Well you look alright! especially if Ive just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only wont help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.
-Please understand that being able to stand for ten minutes doesnt necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesnt mean that I can do the same today. 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", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what LUPUS does to you.
-Please understand that LUPUS is variable. It's quite possible (for me, its common) that one day I am able to go to work, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.
-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously LUPUS deals directly with the immune system, and because our immune systems don't work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldnt you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
-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 of forgotten just because I'm out for the day (or whatever). LUPUS does not forgive.
-If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I dont want to get well. It's 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 LUPUS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, if something worked we would know.
-If after reading that, you still want to suggest a cure, then do it, but dont expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me.
