It's Time We Start Talking About Health Anxiety

Fun fact of the day: a well-meaning stranger at a hospital cafeteria once said to me, “Practice makes perfect, right?” That would’ve been a lovely glass-half-full sentiment if the kitchen messed up my omelet order, but mind you, she was referring to how many surgeries I’d had at my age (13 by my late 20s). I waffled between emphatically shrugging my shoulders and spewing out a monologue about how much easier it actually doesn’t get, but instead, I just made an awkward face and scrunched my eyebrows as if they were tangled fishing hooks and got the hell out of dodge.

I still think about that encounter to this day.

I’m a little bit older now, and have since stopped hiding my feelings and opinions on what it’s like to live with a chronic illness (PSA: it sucks), especially one that requires spontaneous surgeries and a rainbow of post-op appointments and check-ups and scans and medication changes. As the years go on and the diagnoses pile up, I’ve gotten better about advocating for myself and educating others. I think a lot about all of the missed opportunities that I’ve had to start a dialogue about what it means to be perennially sick. The pain that it causes. The guilt that it instills. One of my biggest regrets so far in life is that I spent too long hiding who I really am and what I go through every day for the sake of others’ comfort zones. This just in — don’t be like me.

So in an effort to live my truth out loud, this is what I wish I would’ve said in that chance meeting in the omelet station line.

First off, excellent decision on the Greek omelet. Secondly, no, “practice doesn’t make perfect” when it comes to managing a chronic illness. I would actually say that it gets worse over time. As the years tick on and the responsibilities morph, your mortality hangs in the balance while the anxiety grows.

I worry all of the time. I worry about when I’ll get my next infection, or if my preventive migraine meds will just stop working to manage my condition altogether. I worry about the side effects of new treatments, and about all of the big events I’ll miss out on because of my constant yet unpredictable pain. I worry about changing the world when I can’t even change out of my pajamas most days. I worry that everyone in my life will all of a sudden stop loving me, or that they’ll leave me altogether because they’re just so damn tired of it all. (I am too, for the record.)

You see, last summer I had an MRI on my brain to see if I had a blood clot on my left facial nerve. At the time, I had been having intense bouts of nerve pain ever since I had ear surgery near the nerve over a year ago. When the results came back, they didn’t find a clot or blockage, but what they did find was a small mass tucked away in my right ear canal. It was a chance finding. A startling surprise that left me forgetting how to breathe. I couldn’t believe it, as I was completely devoid of any irksome symptoms. But given my convoluted medical history, it was essential to remove the growth to prevent further problems. So five months later, I had surgery.

That surgery was about 10 months ago. And in just a couple of weeks, I’ll have my follow-up scan to see if the mass was removed in its entirety and if my ear canal is like a corn maze without the fun – or if I’ll need a second surgery this winter/upcoming spring.

This will not be my first brain MRI. I’ve had several, more than I can remember actually. I’ve done the practice, given the time, I’ve gotten “good” at the process. And yet, here I am, completely terrified.

As the days tick closer, I’m starting to lose sleep. My heart races like a sand timer when I start to think about having another surgery. The hospital may be my second home, but that doesn’t mean that I like it or that I am wholly comfortable. Most times, I think that my wealth of experience actually makes me worse off. I start brainstorming the possibilities and the what if’s and the maybe’s because I’ve seen that show before. I’ve stayed for the encore and it ain’t pretty.

Health anxiety is so very real for me. It hasn’t gotten better over time. It doesn’t lessen with repetition. Getting bad news at a doctor’s appointment twists your insides like a wet towel just as much the fourth time as it does the first. And you know why? Because I’m not a robot! My feelings are very much a palpable being on their own. They require tending to, as a garden would.

So if you’re reading this and are anxious or scared because of your health, it doesn’t matter if you’re a veteran or a new member to the chronic illness club. Your feelings matter. You don’t have to be strong or brave if you’re not. You don’t need to selectively filter your conversations to make others feel content with their own brittle humanity.

I’m going to start talking about how I scared I am more often, even when I’m in line for a subpar hospital omelet. Because maybe then, by facing my anxiety, I’ll be able to better cope with its sticky grip.