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Understand me & Lupus – A Letter To People who are NOT struggling with Lupus


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Found this today and thought how appropriate .This explains a lot of how I feel daily.
Yesterday I was able to work with my husband filing,lifting,standing and felt good .Today I am in bed and can't even keep my eyes open and the pain is intense . It's definitely a rest day . Hopefully this explains a bit more about this disease . Hugs.
Misty 💋
Sometimes you just want someone to understand what you are feeling and just be there for you, without offering suggestions or judging you. Yes, sometimes when I say “I’m okay”, I want someone to look into my eyes and see the truth. May be hug me tight and say, “I know you are not”. I sometimes want to know that someone cares enough to see the truth that I am trying so hard to hide… But if you don’t look deep, you may not see, because I have hidden it deep and it is not for everyone to see.

“Oh! You don’t look sick!” Yes, these words can leave you feeling irritated and sometimes it upsets you. Some people by their insensitive words, invalidate the pain and you feel like they don’t believe it’s really all that bad. You are the only one who understands your tiredness, pains…
As a person who has Lupus, the below letter made a lot of sense and I wanted to share so that people understand.
A Letter To People who are NOT struggling with Lupus From Someone Who Is:
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 bit about lupus and it’s effects, and of those that think they know something, many are actually misinformed.
In the spirit of informing those of you 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 does not mean that I am not still a human being.I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about my family, my friends, school or work (or my inability to go to school or to work), and most of the time, I’d still like to hear you talk about yours.
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 I’m not in a lot of pain, or not extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But your looking so healthy!”… I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either flat on your back or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest, most frustrating, components of lupus.
Please repeat the above paragraph substituting, “sit up”, “walk”, “think”, “concentrate”, “be sociable”, and so on, for the phrase “stand up”…it applies to everything. That is what lupus does to you.
Please understand that lupus is variable. It’s quite possible (for many 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 next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If it happens,please do not take it personally. If you are able, please try to remember how very lucky you are–to be physically able to do all the things you can do.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time.
Telling me that I need to exercise, or do some things to get my mind off it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and am doing what I am supposed to do.
Another statement that hurts is, “You just need to push yourself more, try harder!” Lupus can attack the entire body, or it can be localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain that you can imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, lupus may cause secondary depression (wouldn’t you get depressed and down if you were seriously ill and hurting constantly for months or years?), but lupus was NOT created by depression. It is not imaginary!
Please understand that if I say I have to sit down/lie down/stay in/take these pills *now*, that probably means that I have to do it right NOW – it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. lupus does not forgive, nor does it wait for anyone.
If you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with lupus, then we would know about it. There is worldwide networking (both on and off the Internet) between people with lupus. If something worked we would KNOW.
It’s definitely not for lack of trying. If, after reading this, you still feel the need to cure, then so be it. I may or may not take what you said and discuss it with my doctor.
If I seem touchy, it’s probably because I am. It’s not how I try to be. A matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Lupus is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, so accept me as I am. I know that you literally can not understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.
In many ways I depend on you, on people who are not sick. I need you to visit me when I’m too sick to go out. Sometimes I need you to help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know I’ve asked a lot of you, and I do thank you for listening. It really does mean a lot to me.
Also, I know I am strong and will continue to fight Lupus and support others who are struggling with the same fight! I keep reminding that is the only choice I have!
Author Unknown

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