When I Stopped Feeling Disappointed About My Chronic Illness
I don’t expect much when I walk into the clinic. It’s about 8:45 am on a day late in July. I’m nearly a week out from finals, and I’m exhausted. Truth be told, I haven’t been eating, and I haven’t really been sleeping. For me, stress is often the catalyst that annihilates my self-care. I start the usual new patient paperwork and begin to feel a little uneasy about checking so many boxes on the recent symptoms page. This isn’t the first time this process makes me feel like a phony. It probably won’t be the last. Chest pain: check. Insomnia: check. Difficulty breathing while laying down: check. Breathlessness: check.
Check. Check. Check. It’s ongoing.
I spend over three hours in the clinic, and by the time I’m done, I walk out with a prescription for an overpriced inhaler, a brand-new diagnosis, and a fair amount of skepticism.
I can’t be the only one that feels bewildered after a new diagnosis, right? This has happened three or four times to me in the last five years, and each time I leave the medical office with a new diagnosis. I can’t decide if my body feels more like crying or more like laughing.
I’m a year into living in the Pacific Northwest. I was born at just over 10,000 feet. I lived at about 6,000 feet for the better part of the last fifteen years, and now when I’m literally living at zero or near zero ft of elevation and my other illnesses are more stable than ever- now is when my body decides breathing isn’t super important? I continue on my way to class, and despite my initial shell shock I start to feel angry and disappointed.
I don’t like to talk about the uglier side of illness. The side where everything hurts, and I’m tired, and I’m being less than inspirational. The side where I can’t stop arguing with my loved ones about why I’m sick all the time. The side where I struggle to figure out how to justify why I can’t just be better. The side where I can’t look in the mirror without seeing a sick person before I see anything else.
This summer I had a lot of the uglier side of illness.
In June, I had high hopes. Most of which were entirely wrapped up in all the peaks my partner and I would bag, all the dope photos we’d take, all the crazy adventures we’d get into. Asthma clearly had a different plan. When the summer started, I had at least a dozen hikes and backpacking trips on my list, scribbled out on the chalk wall in my kitchen. By the time I left for Colorado a week ago, not a single one was checked off. The list was a constant reminder that I didn’t do the things I set out to do and I didn’t see the things I sought out to do.
In my experience disappointment has perhaps been the worst symptom of the illness that I grapple with. It’s the symptom that won’t go away with a pill or a new treatment. It’s the symptom that stings the most. The one that all too often defines much of my self-doubt, and at times even my self-loathing. I don’t have a quick fix for disappointment. What I do have is honesty and the ability to be still. So, here is my truth: I was disappointed this summer. I was crushed by the new diagnosis. I was dispirited by the pain. I was sad that with this new condition, came a whole new set of circumstances beyond my control. I was disappointed. I am disappointed.
A few weeks ago I took a trip to Rainer National Park. Not surprisingly I was still pretty sick the day we went. I didn’t want to get out of my jeep. I didn’t want to load up my bag with my essentials knowing how heavy it would be after the first 500 ft. I didn’t want to push through the pain. Yet my 9-mile hike ended up being one of the most incredible outdoor experiences I’ve had in the Pacific Northwest. It was painful for sure. It was disappointing at times. Enter in the stillness. What I want to communicate is that once I pushed through the storm, through the pain, and the coughing and the burning feeling all over my torso I found the stillness. For whatever reason, I stopped feeling so inundated with disappointment, and pain, and illness and instead felt an immense amount of gratitude.
Gratitude that I made it. Gratitude that my body could see me through the pain. Gratitude that my partner had the patience to help walk me through such a difficult task. Gratitude for all the time I got to explore and consider things away from the torment of that untouched list on my kitchen wall.
Image by Saruh Fenton