Today's post from supportforchronicpain.com (see link below) may sound a little corny and/or contrived but it reflects one of the commonest problems that's brought by readers to this blog's attention concerning living with neuropathy and that is...other people's total misunderstanding of the situation. Nobody's at fault here - it's just a lack of knowledge as to how neuropathy works but what this letter does is carefully 'educate' the reader, without bitterness or rancour and as such may be extremely useful if people's reactions to your problem leave you speechless and frustrated. May be worth sending to assorted family and friends!
Letter to a friend
The ‘Letter to a friend’ has been circulating the internet for years, and is constantly being adjusted by those using it. I definitely believe that the letter deserves a spot on this website – rarely have I seen the things that you’d want to tell to your partner, family, friends and colleagues phrased in such an eloquent way:
Dear friend,
You know that I am a chronic pain patient. Having chronic pain means many things change, and many of them are invisible. 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 who think they know, many are actually misinformed. When the illness or pain is invisible to the naked eye, the consequences can be even more destructive.
Social relationships of chronic pain patients often suffer. Of course that’s not something I want to happen, as that makes my pain only harder to bear. I would like to use this letter to explain what suffering from chronic pain means to me.
Please understand that being sick doesn’t mean I’m not the same person I was before. I am forced 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 sometimes, but I’m still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too. Please tell me about the cool things you have done, or the problems you have. I still want to be a good friend to you, and I don’t want us to stop talking about everything we love to talk about. 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 that I’m not in a lot of pain, or that I’m 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 you look so healthy!” I am merely coping. I am sounding happy and I am trying to look normal. If you want to comment on that, you’re welcome to do so. 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 paralysed, or you can move. With this one, it gets more confusing every day. It can be a bit like a yo-yo. I never know how I am going to feel when I wake up the next day. In most cases, I don’t even know know on a minute to minute basis. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting “standing’ with “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s 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, “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. I still love to be invited for nice things, maybe even more than I used to. I will tell you whether I can go or not. 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 “getting out and doing things” does not make me feel better, and can often even make me significantly 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 of it”, may frustrate me to tears, and it is incorrect. If I was capable of doing some things at any- or all of the time, don’t you think that I would? I am working with my doctors and I am doing all that I can. Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can affect the whole body, or it might target specific areas. Sometimes, participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever 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, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years at a time?). I do like when you encourage me to do my exercises or when you help me find new activities that I am able to do, and it would be wonderful if you compliment me when I manage to do them. Please understand that if I say that I have to sit down, lie down, stay in bed, or take my medicines right now, that probably means that I do have to do it right now, It can’t be put off or forgotten just because I’m somewhere, or because I’m right in the middle of doing something. Chronic pain does not wait for anyone. If you want to suggest a cure to 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 better. Lord knows that I’d love to. 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, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even worse. If there were 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. It’s definitely 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. Please understand that if I seem touchy, it’s 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. I have been, and am still, going through a lot. Chronic pain 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, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is 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 help me with the shopping, the cooking or the 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 that you care about me, that you feel helpless because you cannot put an end to my pain. Please, don’t let this feeling of powerlessness come between us. I don’t need you to cure me, I need you as my friend!I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot. Love from me
This letter was originally written by Ricky Buchanan under the name of Bek Oberin around 1995. Ricky is an internet veteran, having started one of the first 25 blogs on the web. She lives in Australia with disability from chronic fatigue syndrome (CFS). The letter was first written to let people know what it is like to have CFS or Fibromyalgia and has been adapted for a lot of other chronic disorders.
http://www.supportforchronicpain.com/coping-with-chronic-pain/letter-to-a-friend/
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