YOU can't see Lupus

Because this is my first post, the first blog is going to reflect the actual name of my blog: "YOU can't see Lupus"

YOU can't see: Lupus or other auto-immune diseases (not just disorders). Just because I smile through my pain does not mean I’m not ill, really ill. Think about this before you judge others: Having Lupus means many things change, and a lot of them are invisible. Most people are misinformed about Lupus. In the essence 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 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 me stuck inside this body. I still worry about my children going to school, finances, 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. I’d like nothing more than to be able to get on the floor and play with my little boys, color with them, play Play Doh. But, once I get on the floor, it’s not that easy to get back up. 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 sound great!" It’s not that I sound great, I am sounding happy, because I may be happy at that moment. If you want to comment on that, you're welcome. -Furthermore, many of my symptoms aren’t always visible to people who don’t know me “well”. If you see me and I look fine, this doesn’t mean I’m not in pain, not exhausted, etc. Please don’t say "Well, you look alright!" Especially if I’ve just told you I feel sick/have been very sick. I can look ok and still be very ill. Telling me I look ok not only will not help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling ill is hard enough without having to continually struggle to make people believe you are, indeed, sick. -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 sixty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed with pain, or you can move. With Lupus 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 out for the day, 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. I may need to cancel an invitation at the last minute. If 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? -Obviously Lupus deals directly with the immune system and because our immune systems doesn’t work the way yours does, 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 cant be put off or forgotten just because I'm out for the day (or whatever). Lupus does not forgive & Lupus doesn't discriminate. -Another thing that happens with Lupus, that is not forgiving; “stress”. If our body gets too stressed out or we’re too fatigued, our immune system goes into a “flare”. A “flare” is our body’s worst nightmare. There is no time frame or time limit on the flare. One persons flare isn’t the same as the next persons flare. Flares are excruciating painful. -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. 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 and if something worked we would know. -I need you to understand me.