Most people who have known me for any length of time know that I suffer with chronic back pain. Most know that it all started with an injury sustained while serving in the US Army over 30 years ago. Looking back on this I know now that it is what ended my time in the military. I self medicated with alcohol and drugs for the last year I was on active duty but my health and physical readiness continued to decline. I tried to remain active by joining the Army Reserves and then the National Guard, but even that just wasn’t possible. All through this the military kept telling me there was nothing wrong with my back.. basically it was just all in my head I guess. And now the V.A. is telling me the same thing.
Recently while browsing some of the websites I frequent I found a letter that was written by a fellow sufferer that I wanted to share with my family and friends. I have made a few adaptations here and there to fit my situation a little closer. I hope you take the time to read this.
Having chronic back pain means many things change, and a lot of them are invisible. Unlike having cancer or other more visible conditions, most people do not understand even a little about chronic back 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 having this condition doesn’t mean I’m not still a human being. I spend most of my days 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 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 like this 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 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 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 paralyzed, or you can 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 back pain. Now, please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic back pain does to you.
Please understand that chronic back 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 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, 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 feel 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, lose weight, 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 this any or all of the time, don’t you know that I would? I have pretty much given up on doctors but I am doing what I am supposed to do. Another statement that bothers me is, “You just need to push yourself more, try harder”. Obviously, chronic back 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 language.
Also, chronic back pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or 30+ years?), but it is not created by depression. Please understand that if I say 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 or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic back pain does not forgive, nor does it 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 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 worse, not better. 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 lower. If there were something that cured, or even helped people with chronic back pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic back pain. If something worked, we would KNOW. It’s definitely not for lack of trying.
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 back 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. 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, 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 I asked a lot from you, and I do thank you for listening. It really does mean a lot.