Letter to Normal People

Letter to normal people
I am writing this so that maybe others will understand that even if I look fine, I am not. I found this on the web and would like to share it in the hope that I can educate others about lupus. I am not looking for sympathy. I am not lazy. I am not crazy. I am sick. Whether you choose to believe me or not, it is a fact and I cannot control it. It is sad that so many others will judge me because I do not have an “obvious” disability. So, int he interest of education, please read this letter below that was written by a fellow lupus survivor…

Lupus is one of America’s least recognized major diseases. Nearly 1.5 million Americans have lupus. In fact, more Americans have lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, and cystic fibrosis combined, making it one of this country’s most prevalent medical problems. However, while lupus is widespread, awareness and accurate knowledge about it is UNKNOWN to many!

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 doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don’t seem like much fun to be with, but I’m 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 I’ve been sick for years. I can’t 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 doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re 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 aren’t always visible to people who don’t know me well. So if you see me and I look well, this doesn’t mean I’m not in pain, or exhausted or too shaky to write or sometimes even move, or haven’t lost sensation, or am not having heart problems etc. Please don’t say, “ Well you look alright!” especially if I’ve 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 won’t 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 doesn’t 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 doesn’t mean that I can do the same today. With a lot of diseases you’re 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, if this happens please do not take it personally.

-Please understand that I am not lazy or trying to get out of doing something either. It is the days I feel good that are few and the days I feel bad which are many. I would love to do all the things I used to do, but for me, it is not possible most of the time.

-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 (wouldn’t 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 can’t be put off of forgotten just because I’m out for the day (or whatever). LUPUS does not forgive. It can pay me back by hurting and pain for days afterward.

-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 don’t 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 don’t 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.

Please understand me.