Monday, January 3, 2011

Letter To People who are NOT struggling with Chronic Pain

Well, I've been absent from this blog for a LONG time.  In fact, I haven't posted since before Halloween.  And now we've celebrated Thanksgiving, Christmas, and New Years Day.  But I decided not to apologize this time.  I couldn't really help it.  I've been ill, and I've been trying to post a bit on my new Lyme blog as well.

In a Chronic Pain forum that I participate in from time to time, there is a reporter who is asking to interview people about their daily lives with chronic pain.   I have emailed her indicating my willingness to discuss my own life and my challenges.

Of course, I do wish each of you a Happy and Healthy New Year, and hope that you do NOT have to deal with chronic illness or chronic pain.

But this reporter brought to mind a letter that has been circulating in email and posted various forums for some time; the author is unknown.  I'm posting it here because it really tells it like it is; it is truly worth reading:

Having chronic pain 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 chronic pain and its 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’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 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.

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 chronic pain.

Please repeat the above paragraph substituting, “sit up”, “walk”, “think”, “concentrate”, “be sociable”, and so on, for the phrase "stand up" applies to everything. That is 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. 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…” Obviously, chronic pain can deal with the whole body, or 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, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

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. Chronic pain 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 my form of chronic pain, then we would 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 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. 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, 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.



Kathryn said...

Thank you for sharing this. My issue is chronic fatigue more than chronic pain (pain comes and goes, fatigue remains forever), but every word here is accurate for chronic issues in general.

Thank you.

JoAnn said...

Yes, that's so true....thank you for pointing that out Kathryn!

You can substitute the words "fatigue" or "illness" for "pain" everywhere in this letter, and it would still work very well.

Sophie33 said...

Hello there!

I really love your tasty blog & I agree. I also have chronic pain in my both arms & in my right leg: neuropatic pain, for 4 years now. I don't work anymore, it isn't possible. Everything you want to do, you must plan always in advance.I relate in a huge way to you!

Just knwo that I will be thinking of you & I also loveyour unique & tasty recipes!!

JoAnn said...

Thanks so much for commenting, Sophie! Although I'm sorry to hear about your own chronic pain challenges. There are so many of us out there who struggle with chronic illnesses and chronic pain. Take care!