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01/07/2010 07:59 PM

do you need to explain lupus to family & friends

breezyhope
breezyhope  
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Post edited by: breezyhope, at: 03/12/2012 09:09 AM
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01/07/2010 08:08 PM
breezyhope
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this one is a little shorter.

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 mis-informed. 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 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 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, your sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

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 thirty minutes yesterday doesn't mean that I can do the same today. With a lot of disease 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, it's common) that one day I am able to walk to the park and back, 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 loose (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 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 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 many 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.

Although this is a Copyright of Fibrohugs.com we grant permission for anyone to use this at any time as long as the following "Copyright of www.fibrohugs.com Written by Ronald J. Waller" is fully visible.


01/07/2010 08:20 PM
Dawn2009
Dawn2009  
Posts: 65
Member

i love this it is evetything i have been needing to say to family and close friends so they understand. if you could please give me the name of the website you found it on so i can pass it on to my family!? that would mean so much to me cus i don't know how to tell them what it is like or what it is. this letter says it all!!!!

Dawn


01/07/2010 08:33 PM
Looopie
Posts: 2268
Senior Member

Hi Wendy. Your posts have described the plights of every lupie, especially the second one. I'll pass these on to my family and friends.

Marie


01/07/2010 08:35 PM
breezyhope
breezyhope  
Posts: 596
Member



Post edited by: breezyhope, at: 03/12/2012 09:10 AM

01/08/2010 06:57 AM
KJC1385
KJC1385  
Posts: 1587
Senior Member

I love it...Wish I had it earlier when my husband wasn't as supportive!

I'm glad your going to tell your family Dawn Smile


01/08/2010 09:00 AM
Dawn2009
Dawn2009  
Posts: 65
Member

Thanks wendy!

01/08/2010 12:09 PM
mumeva
mumeva  
Posts: 6281
Group Leader
I'm an Advocate

This was wonderful Wendy.....my head doesn't always work properly and sometimes I can't find the words to say how I feel to family or friends and this really says it all....thanks so much for sharing these.

Eva


01/08/2010 04:43 PM
KrisLee
KrisLee  
Posts: 477
Member

I like this. I just put it onmy myspace. the second one.

-KRIS


01/08/2010 05:48 PM
jenkstrojanmom
jenkstrojanmom  
Posts: 483
Member

Thanx Wendy.
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