Post 2

When I was diagnosed with Chronic Pain Syndrome I went to the library and looked for books with information about this disease. I only looked for a little while and I found one book that I ended up checking out. I had the book for two weeks before I mustered the courage to actually read any of it.

At first it was hard to read, the emotional impact was too great and I could only read a page or two before my system said “No more!” and I looked for other distractions. You see it’s hard to face the idea that I have something that will be with me for the rest of my life. This is something that people who do not have chronic conditions have a hard time understanding.

I’ve found myself trying to explain the psychology behind my pain to my friends. The conversation will start with me wincing at some pain my body has just told me I have. My friend will pick up on it. I’ll be asked if I am alright. I’ll say I’m fine. Then from there I’ll get suggestions. Have I tried this vitamin, have I tried this form of alternative therapy. Have I heard of this rare disease that maybe I have. Have I gone to this kind of doctor. Always there are suggestions, things I’ve not tried yet that will surely be the answer! If I just try this one thing, then I’ll be fine! (Just so you the reader knows, this type of conversation makes me crazy. Literally crazy. I feel like my pain is all my own personal fault and I’m obviously just not trying hard enough.) After this fun filled part of the conversation the suggestor picks up on the look of annoyance on my face. Then I’m asked what’s wrong. I explain that I don’t always like the suggestions, that it in fact adds to the already heavy psychological burden I carry. And then, after that sort of comment do I try to get someone to understand the psychology behind all of this. (It never really works, but I try.)

So I say, “Imagine that your back hurts all the time. So you go to a doctor and you ask them what is wrong. They say you are fine, your X-rays are clear and so is your MRI. You are young! You are healthy! You are fine! So you go to another doctor to get a second opinion. But she says you are fine too. So you try a chiropractor, and then a physical therapist, and then an energy healer, and then you finally ask your dog because maybe he has a valid opinion. But everyone says you are fine. Only your dog asks you how you are, because really only your dog cares.

After all of that, your back still hurts and because your back hurts you can’t run anymore. You used to run all the time, that was your thing, that was what you did to make you happy. But you can’t do that, your back hurts too much. So you swim, but then that starts to hurt too. You go to the doctor again, you ask for pain medication. They give you some good, hard drugs. Then after months of that, you become physically dependent. But people decide to call you a drug addict instead, because they don’t seem to know the difference between physical dependency and addiction. And there is a difference.

The dugs help. You can exercise again, you can sleep again, you can actually do your job. It only helps a little, but hey, you will take what you can get. All the time that your back hurts, your entire world is changing. You have to rearrange your life to fit your backache. You workout at certain times when you are in the least amount of pain, you don’t go out with friends because it hurts, you don’t travel as much because it hurts, sex even hurts! (This is a real rip off because sex releases a lot of endorphins, which are our bodies natural pain killers, exercise does too.) But you can’t do all these things like you used to, because your back hurts. All of these facts make you very, very sad. You have to change your identity, you have to rearrange how you think about yourself. Your identity is threatened by the constant pain in your back. You cry a lot.”

At this point who I am talking to seems to be getting it. There is a change in their face, they seem to have some small idea, a small grain of rice idea, about what you go through. But I’m sure that after 20 minutes their brain is distracted and they go on to think about other things. Their bodies work after all. They get aches and pains of course, they get sick, they get hurt, but more often then not, their bodies bounce back to the original healthy forms. Mine doesn’t.

I try to explain myself, but I know that it is really futile. I actually don’t do it all that often. I explain every once in a while, mostly to shut people up. I do it when I am fed up with their suggestions, when I am tired of hearing things I’ve already heard. Most of the suggestions I get now are ones that someone else told me months ago. There are really only so many things you can do for chronic pain.

All of this is a digression from what I initially started to talk about. I’ve gone on a long tangent. But it’s related. My point is that there is a very heavy emotional toll that is extracted on a daily basis for those who live with pain. I’ve felt this weight a lot. So much of my time in denial was avoiding the weight of my disease. I didn’t want to acknowledge how heavy it was, so I ignored it, I bargained, I thought if I just tried this one thing, then I’d be fine. Slowly though I started to allow the acceptance to creep into my brain. I slowly added the weight, I walked around with it on a daily basis and found that I could carry the burden. But I still struggle, of course, I’ll always struggle. I have full faith that as time goes on and I find ways to manage and reduce my pain I’ll struggle less, but I am accepting that I will struggle forever, at least in some small way.

One reason I’ll struggle is because I’m never once able to escape the pain. I am reminded daily that my body is different, that it doesn’t know how to interpret pain. My favorite ways to escape temporarily is via comedy. I watch a lot of comedy. This helps me escape, but I can never get away completely. The monologue that I give to my friends is an effort to get them to understand that there is no escape, but I don’t think that translates very well. Unless a person has dealt with something like this, there is really no way to fully understand. I do appreciate empathy, I do get a lot of that, but not many people in my life actually understand. A few do, and I connect well with them. I can vent to them, I can tell them of how I am hurting and they get it. But most people don’t, and so I don’t talk about it. I have holed up inside my pain because no one wants to hear a whiner. That is one of the things that was talked about in the book I got from the library. No one complains, because no one wants to hear it.

Silence though is killer. Psychology has taught me that bottling up emotions is not good. Eastern philosophy has taught me that it makes illness worse. This is where this blog comes in. Somehow I view the internet is a safe place to vent. I can write all that I want and put it out into the cyberspace and it is not viewed a whining. At least, that is my thinking. If someone doesn’t want to read my venting, they don’t have to. I think that is the beauty of blogging and of journaling. (Which is really what my blog is, an on-line journal.)

These are my thoughts for the day. I was going to write about something completely different, but this is what came out. Oh well. I’ll write about the differences between drug addiction and drug dependency another day.

Thank you for reading. I appreciate it.