What It’s Like

I’ve been in school a long time. I’ve been missing out on things a long time. In 2004, I stopped taking martial arts. 2006, I had to drop out of an a capella group I was in because I couldn’t handle standing for rehearsals for two hours–too much pain. More recently, I had to cancel a study abroad trip on account of a combination of issues with both the pain and the depression that would’ve made the trip painful at best, and put me at risk of suicide at worst.

There’s a thing you learn that I think can only really be understood by people who’ve suffered from depression or chronic pain. I don’t think I’ve ever seen it put better than in naamah’s journal on suicide: “There’s an amount of pain that will buy anyone.”

Whether the pain is emotional or physical, there is a point beyond which the only thing you can think about is making it end. There’s no rationality to it. When you put your hand to a stove and it burns, you pull it away. With this kind of pain, the world is the stove.

Maybe it’s more accurate to say your body is the stove. Either way, there’s only one way to pull your hand away.

The world is made up of things I can’t do. Sex, computer games, martial arts, swimming, playing music, watching a movie, driving for too long, etc, etc. When you’ve been dealing with all of the things you can’t do for as long as I have, managing your life to fit in the few things that you can, for as long as I have, and things still don’t get better, you feel like giving up a lot. You feel like you’re doing everything you can, and you’ve been doing everything you can for as long as you can remember, and you still have the pain. On the worst days, it’s like your own body is a torture chamber. On the best days, where there isn’t too much pain, you have to be very careful to remember that if you do too many Normal People Things without thinking, it’ll be worse again tomorrow.

This is what it’s like a frighteningly large amount of the time.

Shades of Stigma: Depression

I want to talk about the different kinds of stigma people with brain problems have to deal with. In dealing with depression, you often have to do a lot of work to overcome your own biases about things like meds and therapy. Even if you do manage to overcome those, you always run the risk of having to deal with other people who haven’t. It’s a challenge, and it can make it difficult to talk about your condition and what you’re doing about it for fear that others will be judgmental.

For today, depression itself. For a long time before I realized I had it (and was subsequently diagnosed with it by a professional), I tended to think of depression as something that you only ended up with if you didn’t understand the world very well. Something you got if your priorities were crooked or some such. I was wrong. I’ve known people who thought the key to getting out of depression was as simple as thinking positive. Those people are wrong. There is a place for learning to change the way you think about things in dealing with depression, but it is not even close to a miracle cure. Then there’s the “Just suck it up” mentality, for which I’ve always liked this response:

“I guess my other pet peeve is when people think that ‘suck it up’ is an acceptable response to depression or suicide. It doesn’t work that way, and it’s just plain not helpful. It’s like seeing someone broken down on the side of the road with smoke coming out of their engine and saying ‘Hey, have you tried fixing your engine?'”

Depression is hard shit. It’s hard, it’s complex, and if you know someone with it, chances are that things like “Think positive” or “Suck it up” are going to hurt, not help. Depression is a brain problem. There are a lot of ways to try and deal with it, but dealing with it is almost never simple or easy, and if you honestly think someone’s response to “Think positive” is going to be “You know, I’ve never heard that before; thanks man”, then here is a tip from me to you: you are wrong.

It helps people with depression to have people they can talk to about it. It doesn’t help when those people make flippant, oversimple assumptions about their condition. If you’re talking to someone who is depressed, always ask before assuming. “Have you tried X”, is a better thing to say than, “You should try X”, and, “What have you tried?”, is better than, “Have you tried X”. By the same token, asking, “How can I help”, is a much better idea than assuming you know what will help and doing that.

Fun Pain Fact

The PT I see regularly is very into the research side of myofascial pain, and very talkative, so I get interesting facts and anecdotes to take away from most visits. Here’s your fact of the day:

Myofascial low back pain is interpreted by the same area of the brain that processes depression, which is, possibly, why this variety of pain in particular is as powerfully correlated with depression as it is.

Living with Chronic Pain

Chronic pain is one of those diseases that are invisible—no one knows you have it unless you tell them. You’re not missing a limb, you don’t have visible physical symptoms, the only way anyone knows the difference between you and a normal person is if you tell them. Telling people is hard. I’ve never liked talking about my chronic pain with people, because most of the time it feels like there’s nothing to say.

“Why, yes, I have been in excruciating pain throughout our entire conversation. Now let’s have an awkward silence where you try and figure out something sympathetic to say, and then you say it, and then I try and change the subject to save us both the awkwardness of acknowledging the pain-filled reality of my situation and our mutual inability to do anything about it. Pass the dip.”

My particular variety of chronic pain is most likely what’s called myofascial pain syndrome. The short version is that it’s an accumulation of persistent muscle knots of sufficient number and severity to produce pain. Practically, what this means day-to-day for me is that I’m always in pain, always planning out my next move with respect to how it will affect my level of pain, and the things I can do in a day are very limited.

Exercising too much makes the pain worse. Moving around too little makes the pain worse. Stress makes the pain worse. Lack of sleep makes the pain worse. Sitting, standing, lying down, or just in general being in the same position for a long period makes the pain worse. As you can imagine, many of these contributing factors play into each other. Being stressed causes pain causes stress causes pain causes lack of sleep causes stress causes pain, ad infinitum.

Think of something you do for fun and I can almost guarantee you there’s a significant risk it will aggravate pain in some way. Take a sampling of the things I enjoy: exercise (carries a risk of overdoing it), playing music (involves sitting or standing for extended periods), programming (sitting for extended periods), watching tv (sitting for extended periods),  and sex (almost always a high risk activity pain-wise).

Here’s the list of things that never carry any risk of increasing pain:

There, done.

Welcome to the world of the chronic pain sufferer. Count your spoons, think ahead, be in pain.

I’m not trying to be dramatic or anything here. I’ve spent most of the last seven years of dealing with this not wanting to talk about how bad it gets, or even how bad it is on average. Hell, even how bad it is on the best days. Lately I’ve realized that being completely open about just how bad it is can be cathartic, though, and so I’m trying to fight the instinct to sugarcoat the difficulties. Because whether I feel whiny or not, this is how it is. It’s important for me to acknowledge that, both for myself, and for others.

Introduction/About This Blog

I’m a mid-twenties college student suffering from depression and chronic back pain (myofascial pain syndrome, to be specific). I’m starting this blog to keep myself talking, because I’ve found that talking helps me and others, and because I think it’s important for more people to understand what it’s like to deal with depression and chronic pain. Thanks go to JT Eberhard at WWJTD and Emily at bipolarcollegesurvivor for the inspiration to give this a shot.

My struggle with chronic pain is the primary reason I’m starting this blog, but I have a lot of interests besides, which may also end up here. I don’t know where this blog is going, or if I’ll manage to keep up with it, but here goes.