This is the first post of an infrequent series on CHRONIC PAIN. For openers, I’ll share excerpts from the “open letter” reprinted on Spine-Health.com.
Adapted from the original found here and has been posted on the Spine-Health.com forums, this “open” letter is written to help chronic pain sufferers express themselves to others. If you have chronic pain, know or love someone who does, please consider sharing and discussing these points.
Open letter from a person
with chronic pain**
Having chronic pain means many things change, and a lot of the changes are invisible.
Unlike having cancer or being hurt in an accident, most people do not understand chronic pain and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those 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 doesn’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 think about work, 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 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 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 trying to look normal. If you want to comment on that, you’re welcome to.
Please understand that being able to stand up for 10 minutes doesn’t necessarily mean that I can stand up for 20 minutes, or an hour.
Just because I managed to stand up for 30 minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can’t move. With this one, it gets more confusing every day. 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 and most frustrating components of chronic pain.
Please repeat the above paragraph substituting “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 (and 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 this happens, please do not take it personally. If you are able to, 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 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 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 know that I would? I am working with my doctors and I 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 affect the whole body, or be localized to 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?), but it is not created by depression.”
**I’m sharing this open letter in the hopes of sharing some food for thought and offering you an opportunity to see something that perhaps you haven’t before.
Again, if you have chronic pain or you know or love someone who does, please consider sharing and discussing these points.
Here is where I found and have shared from this open letter.
Final five points in tomorrow’s post!
Carpe Diem beloveds!