I have a chronic illness called inappropriate sinus tachycardia syndrome. Basically, sometimes my heart freaks out when I move around and starts beating way too fast. Then it can’t calm down enough when I stop moving around and I get short of breath. I have medication to help control it and I’ve had a bunch of tests run to make sure my heart is otherwise healthy (which thankfully it seems to be). But I still have days like today where I can do everything right and it still acts up.
These days suck. These days make me feel helpless and out of control. It’s frustrating to know that you’ve done everything you can and it doesn’t help at all. On these days, I have to remind myself of all the good days I’ve had recently. I have to remind myself that this illness is not my fault. It’s not a punishment for something I did or something I am. It just… is. Strangely, I sometimes feel guilty when I have a bad day. It feels like there must be something I could have done that would have prevented a flare up. But there isn’t. Sometimes all the right things just aren’t enough. This concept can be really tough for humans to process. We don’t like feeling helpless. I can’t help but think that this concept of illness as punishment or indication of failure comes from the ghosts of ancient ways of thinking still clinging on to the modern mindset. As much as I believe in science and rationality, there is still some tiny (but powerful) part of me that whispers, “If you were just better, this wouldn’t affect you as much.”
Since this illness is a relatively new thing for me, I’m still trying to figure out what works for me and what doesn’t. Most of the time, taking my medication is enough to prevent a flare up. I get enough sleep, don’t drink alcohol, and limit my caffeine intake. These lifestyle changes have helped, as well. The part I don’t know is what to do to help when I have a flare up like today. Sometimes just slowing down for the day is enough to help. Today it seems like nothing really helps. My heart rate is under control, but I still feel like I can’t catch my breath. This morning I thought about what happens this fall when I’m back on campus and have a test. Anxiety is a trigger for me. If I feel like I can’t breathe during a test, I’m not going to do well. I realized I’m going to have to talk to my cardiologist about working with the disability services office to figure out what to do if I have a flare up on a test day. Unfortunately, this situation creates a lot of opportunities for other people to question the veracity of my condition. Is it really that bad? Are you sure you couldn’t just try a little harder? Now, I’ve never worked with my university’s disabilities services office. I hope they don’t say things like that. I hope that they’re kind and helpful. But I know that people with chronic illnesses get asked those kinds of questions a lot. By disability services staff, social workers, co-workers, bosses, teachers, friends, family, perfect strangers… the list goes on.
I’m new to the world of chronic illness, but I really hope that I can quickly figure out ways to cope with flare ups and bad days. That I can figure out how to talk about this illness with other people without letting their questions and well-meaning but misplaced advice to make me question myself. I hope any of you out there dealing with chronic illnesses are able to do these things, too. I hope you guys have more good days than bad days and that your bad days are never again as bad as your worst day. But in the meantime, let’s just remind ourselves that the good days do, in fact, exist and we will have one again.
Stay safe. Be well. Cut yourself a break.
Love,
Flora Peach
Flora Stewart 