A Letter to People without Chronic Pain
Letter to people without Chronic Pain:
Having chronic pain means many things change, and a lot of them are invisable. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
...These are the things that I would like you to understand about me before you judge me..
Please understand that being sick dosen'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, sometimes 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, my family, my 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 not being miserable. So, if your talking to me and I sound happy, it means I'm happy. That's all. It dosen'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!" or "But, you look 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 dosen'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 dosen't mean that I can do the same today. With a lot of diseases you're paralysed, or can't 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. This is one of the hardest and most frustrating components of chronic pain.
Thats What Chronic Pain Does To You.
Please understand that chronic pain 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 " You did it before" or "oh 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 this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do. Please understand that the "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 exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don't you think I would?
I am working with my doctor and I am doing what I am supposed to do.
Please understand that if I have to sit down/lie down/stay in bed/ or take these pills now, that probably means that I do have to do it right now. it can't be put off of forgotten just because I'm somewhere, or I am right in the middle of doing something.
If you want to suggest a cure to me, please don't. It's not because I don't appriciate 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 have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definately not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, its probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.
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 to the store. You are my link to normalcy of life. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I ask a lot from you, and I thank you for listening. It really does mean a lot....