Last time, I touched on the irony that meds for Crohn’s often have side effects that are as bad as the disease itself. I’d like to delve further into this. To understand what it’s like to live with Crohn’s, you need to appreciate the delicate balance of helplessness and control.
Let’s talk about helplessness first. To live with Crohn’s is to endure being a victim. It’s very difficult and it’s very draining. For starters, you have the disease itself. Your body turns on you and hurts you, and there isn’t a thing you can do about it. Diet, exercise, sleep, stress management, and lifestyle can all contribute to a flare, but ultimately, it is out of your control. I’ve had flares when I’ve been living well and I’ve had flares when I’ve been living irresponsibly. Next, you have the meds. These are designed to help, but they always bring along side effects. If that isn’t bad enough, patients sometimes literally need to elect to take medicines that carry risks such as cancer, liver disease, and brain fungus. Imagine putting yourself in that situation. Suffer now or maybe suffer and die later. It’s mind-and-heart breaking. Then, there are the tests. These are often uncomfortable to painful, but once again, you must endure. Lastly, there is the lifestyle. Crohnies often have to live a more conservative lifestyle and bail on social activities. We don’t get to do what we want when we want because we can’t trust our bodies. All of these experiences add up to a feeling of total helplessness and the realization that you aren’t in control of your own life.
So, Crohnies often compensate by taking control where they can. Healthily, this looks like playing the odds by having a good diet, getting lots of rest, and reducing stress as much as possible. You do the best you can and live as close to the life you desire as possible under the constraints of the disease. However, control can manifest in unhealthy ways too. Aside from getting OCD, I’ve known a few Crohnies who lead very unhealthy lifestyles (smoking, drinking, drugs, etc.). On a superficial level, these just simple lifestyle choices, but underneath, it’s all about control. The train of thought goes something like “I won’t let this disease make me sick or kill me. I’m going to make me sick or kill me first.” They can’t stand the helplessness, so they do what they know is bad for them because screw you, I’m in charge of my own life.
So what’s the takeaway? I have to admit that I don’t know. I hate feeling helpless, so I like to take control. Sometimes it’s healthy and sometimes it’s not. Think about it this way: I’m putting The Crohn’s Saga out there, but also I’m doing it from the security of being 6 months ahead of my comics so I don’t have to feel emotionally vulnerable. Either way, if you are a Crohnie or you’re a friend of a Crohnie, it’s good to be aware of the balance of helplessness and control.