A letter was brought to my attention, that I totally understand and relate to, for the author has literally taken the words right out of my mouth. Unfortunately the letter is anonymous, and I would like to apologise to the writer, as I had to edit it due to restraints in article length. Please forgive me, but I felt your message was too important not to share. Here is the letter:
"These are the things I'd like you to understand about me before you judge me. Please understand being sick doesn't mean I'm not a human being. I spend most of my day in considerable pain and exhaustion. If you visit, sometimes I'm probably not much fun to be with, but I'm still me, stuck inside this body. I worry about my family, 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, 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, extremely tired, or getting better. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I'm merely coping, sounding happy and trying to look normal.
Being able to stand up for ten minutes doesn't necessarily mean I can stand for twenty, or an hour. Just because I managed to stand for thirty minutes yesterday doesn't mean I can today.
Like a yo-yo, I never know from day to day, how I'll feel when I wake up. In most cases, I never know from minute to minute; one of the hardest and most frustrating components of chronic pain. It applies to everything: sitting, walking, thinking, concentrating, socializing and so on. That's what chronic pain is; variable. It's quite possible one day I'm 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 "I know you can do this!" If you want me to do something, ask if I can. In a similar vein, I may need to cancel previous commitments at the last minute. If this happens, please do not take it personally; try to remember how very lucky you are, to be physically able to do all the things you can.
Understand 'getting out and doing things' doesn't make me feel better, and often can make me seriously worse. You don't know what I go through, how I suffer in my own private time. Telling me I need to exercise, do things to get my mind off it, may frustrate me to tears, and is not correct. If I was capable of doing things, don't you know I would? I'm working with my doctor, doing what I'm supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can affect the whole body, or localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain than you could ever imagine. Not to mention recovery time, which can be intense. You can't always read my face or my body language.
If I say I have to sit down/lie down/stay in bed/or take pills now, it means I have to right now - it can't be put off or forgotten just because I'm somewhere, or in the middle of something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure, 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've been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were a cure, or even something to help people with my form of chronic pain; we'd know about it.
In many ways I depend on people who are not sick. I need you to visit me when I'm too sick to go out. Sometimes I need help with shopping, cooking, cleaning, or taken to the doctor. You are my link to normalcy and help me to keep in touch with parts of life I miss."