The other day was a stunningly beautiful sunny day with a light breeze. Exactly what you imagine when you think of the perfect day to be outside doing, well, anything. I, however, sat looking out the window from my physical therapists office. You know, like you do. My physical therapist noticed me looking and said, “What a beautiful day. Doesn’t it make you want to go for a walk? You know, that is something you can do and it’s very good for your overall health.” I produced my best fake smile and mumbled the appropriate agreement, but it really ruffled my feathers and I couldn’t figure out why. People make these comments all.the.time. Why was this one nagging at me? Turns out, this was a good question.
Healthy people don’t understand that chronic illness and pain is not linear. This means that the consequences don’t always match the actions. In fact, they usually don’t. Why is this important? Because the human psyche functions off patterns and from patterns it gains predictability. Predictability makes the world go round. Of course I would love to go for a walk on a beautiful day. For a normal person who starts a walking regimen they start with a short distance for a week or two and then over time they can walk further and further. Their progress is basically linear, predictable. My body, however, is completely unpredictable. Maybe today I could go for a walk down the block. Maybe I could do it tomorrow and the next day too, but the following day I might not be able to get out of bed at all. Did I do too much? Should I have only walked every other day? Would it have mattered? Suppose this flare lasts for three days and on the fourth I actually feel really good, should I brave a walk? Or am I asking for trouble? The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions. Given a total lack of knowledge about the consequences how do you make these decisions? Think on that for a second. This is how someone in chronic pain lives.
The greatest emotion that this inability to predict our own outcomes produces is fear. No one ever talks about the fear. If there was some ceremony where we were all sworn to secrecy on this matter, I clearly slept through it. When I’m faced with a beautiful day and I’m contemplating a walk my head is calculating it’s very own spreadsheet of costs versus benefits. Will enjoying fifteen minutes of walking in the sun mean I’m down for the next day? Three days? Five days? Week? How high is my pain now? Will this help or hinder? How high is my stress? Will this help or hinder? How is my mood? How is my fatigue? Will this help or hinder? What do I need to do over the next few days? Will I be able to do it? Where am I in medication doses? Will they last the walk? Will I need more after? Finally is it all worth it? Now if you look back at all those questions, there isn’t a single one I can answer definitively. At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago.
While I may have made it clear that the simple is actually quite complicated for those who suffer chronic illness and pain, I think we still have a bad rep for being flaky, cranky, unpredictable, angry, sad and many other things “with no good reason.” I don’t deny that our moods are all over the board, it’s the last bit that is, well, absolutely wrong. Too strong? Give me a chance to explain. When a prisoner of war is taken and they want information these days they use a lot of psychological torture techniques in order to break his mind. The very first thing they do is disorient and imbalance. In order to do this they tend to keep prisoners in cells below ground, they turn on and off the lights randomly. They allow no clocks, no calendars and often use loud music or noise to assure that sleep is disrupted. This disrupts the prisoner’s natural algorithms for being awake or asleep, it confuses him as to whether it is day or night, and he loses his sense of time. This is a means of wearing him down. The next step is creating imbalance, which is created by a lack of predictability. For instance, perhaps one day someone will speak to the prisoner and he responds. After this session the response is all smiles for answering questions, pats on the back, special treatment, and special food. The next day the same person arrives and asks similar questions. The prisoner enjoyed all the positive reinforcement the day before and again he responds. Only this time, to his total surprise, he is yelled at, told he is not worthy of speaking in this man’s presence, he is beaten, and he is not fed that day. Come the third day the same man appears and asks questions, the prisoner does not answer because he now knows he is not supposed to speak. This time the response is the same as the second day, he is verbally and physically abused and they continue to starve him. The fourth day comes, the man appears, the questions start and the prisoner has no idea what to do. How can he answer questions without speaking? This continues day after day, but try as he might the prisoner can’t figure out the answer. Sometimes he is rewarded, sometimes he is punished for speaking. Every now and then he is rewarded for his silence. He is terrified, exhausted, and confused. These are just a few torture techniques used to psychologically break a prisoner. Let me repeat that in case you missed it: These are torture techniques used to psychologically break a human mind.
What does that have to do with the chronically ill and in pain? Everything. To start most of us do not sleep regular sleep cycles (or at all), our body is already confused as to whether it is day or night and our mind is not attuned to time of day or month or season. This is part of the illness and pain blocking other signals and brain fog. However, the more important parallel you see here is we spend all of our lives imbalanced. We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves. We are that prisoner not knowing that if we go through with it whether we will get sunshine and rainbows or the rack (the torture device not a clearance sale at Nordstroms). What kind of choices would you make if you knew that going to see that movie may cost you a broken arm? Going to that party may mean a broken leg? That weekend getaway would probably mean a few slipped discs? Or maybe you will get away with it…this time.
Is it any wonder our moods vary from one minute to the next? We are scared, exhausted, depressed, anxious, lost, disheartened, and so much more. We have no control. We know what we want and it is in sight, but completely out of reach. We are all desperate to get better and would gladly run marathons, backward, barefoot, naked, covered in whipped cream, carrying a monkey who was playing an organ grinder and wearing a fez if that were the path to health, but it isn’t. For us, of moving at all, often means moving backwards. It’s hard to fight something you can’t see or even predict. It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes that your illness can’t possibly be THAT bad. Well, they are right. It’s much worse.