I’ve always been someone who quickly discloses my diagnosis of cystic fibrosis. To me, it was akin to having green eyes or blonde hair. It was a characteristic, a boring talking point, and something that just was. When I would tell a new friend or classmate, I would always get the age old, “Well, aren’t you scared of dying young?”
Truth be told, I wasn’t. It was a boasting point for me for a big part of my life growing up. Look at me! I have a terminal disease, and I’m not afraid of dying. (I wouldn’t find out until later that, surprise, I am.) With that burden lifted, I could focus on other important things and formulate their logical solutions, such as preventing the fiery death of my family by climbing up the stairs in under 10 seconds, or keeping the universe in balance by not wearing the shade of lime green that I was wearing when my great-grandfather died.
It wasn’t until just a few years ago that I was diagnosed with obsessive-compulsive disorder (OCD), and I realized all my little “quirks” and mental tasks weren’t normal. It wasn’t normal to lie awake at night, fervently replaying the events of my day to make sure I didn’t hit someone with my car; or eating only between the hours of 11 a.m. and 5 p.m. (the “safe” hours) after being exposed to the stomach flu; or taking my pills to the count of 1,2,3,4 *swallow* 5,6,7,8 to ensure I didn’t choke like that one time in second grade; or rechecking, verbalizing; and even taking pictures to ensure I unplugged my hair straightener.
You’d be surprised to know that most of my anxiety isn’t based around CF. I definitely have health anxiety, as my Google searches and family members can attest to, but my compulsions and obsessions don’t lie predominantly with CF. They are focused on other things, like the safety and well-being of my family and animals; my relationships; whether the house will burn down; combating false memories, and so forth.
With my best guess, I’d say that my OCD stems directly from cystic fibrosis. In its most textbook and simple form, CF compromises our ability to breathe and our ability to digest food — two of the most vital and necessary functions to sustain life. As much as we don’t like to admit it, CF is in control. If I recall some of my earliest memories, “chokies” (i.e., throat swabs), uncontrollable coughing fits, and manual restraints for invasive and uncomfortable medical procedures come to mind. Losing control of my bodily autonomy had to be traded to keep me alive, but that loss of control reverberated far past those moments.
For some, that loss of control manifests a passion to live life to the fullest. For others, like me, it creates a craving for certainty that spills into every other aspect of life. As someone with CF, I don’t know what my body is brewing below the surface. I don’t know when my next lung infection will be; what haywire symptom will present next; how I will afford my next medication; when and if a cure for those of us who don’t benefit from modulators will be available; or when my time will come. It doesn’t seem too outlandish, then, that my brain is scrambling to find concrete certainty through avenues like completing tasks in threes, avoiding unsafe foods, maintaining clear outlets, and seeking constant reassurance.
Living with cystic fibrosis and OCD means fighting two invisible battles at the same time. It can be exhausting, confusing, and — at its worst — isolating. It will lead you to some hard places, but it can also illicit courage very few get to discover. Keep finding small victories, keep staying present through fear, and believe in healing, even when it comes slowly.
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