This post finishes our series about chronic pain and the family, and with it, I wanted to share this version of a “Letter to Those Without Pain” I saw recently.  In trying to find information about the original author, I learned that Ricky Buchanan is credited with writing the original “Letter” about living with Chronic Fatigue Syndrome.  Her original letter has then been modified for other illnesses, often by unknown authors.  Ms. Buchanan’s website is www.notdoneliving.net.

“Letter to People Without Chronic Pain”

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 don’t understand even a little about chronic pain and its effects, and of those who think they know, many are actually misinformed.  In the spirit of informing those who wish to understand, these are the things that I’d like you to understand about me before you judge me.

1. 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 have work, school, family, and friends, and most of the time, I’d still like to hear you talk about yours too.

2. 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 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 extremely tired, or that I’m getting better.  Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!”  I’m merely coping.  I’m sounding happy and trying to look “normal.”  If you want to comment on that, you’re welcome to.

3. 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 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’m 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.

4. Please understand that chronic pain is variable.  It’s quite possible (for many, it’s common) that 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 “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 don’t take it personally.  If you’re 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.

5. Please understand that ”getting out and doing things” doesn’t necessarily 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 to do some things to “get my mind off of it” may frustrate me to tears and isn’t correct.  If I was capable of doing some things any or all of the time, don’t you think I would?  I’m working with my doctor and I’m doing what I’m supposed to do.

6. 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 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 langauge.  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’s not created by depression.

7. Please understand that if I have to sit down/lie down/stay in bed/take pills 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 I’m right in the middle of doing something.  Chronic pain doesn’t forgive, nor does it wait for anyone.

8. 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 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 has included 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.  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.

9. 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 know it’s difficult to understand my situation unless you have been in my shoes.  But as much as possible, I’m asking you to try to be understanding in general.

10. In many ways I depend on you - people who aren’t sick.  I need you to visit me when I’m 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’re 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’m able.

I know that I ask a lot from you, and I thank you for listening.  It really does mean a lot.

This is a wonderful letter.  I hope you share it with those close to you.  Please visit Ms. Buchanan’s website to let her know your reaction.

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