Peeling Back the Layers of Chronic Illness

On a recent rainy fall day in Washington, D.C., you could find me in my small kitchen apartment cooking up a hearty beef stew. I prepped all the vegetables — the carrots, the celery, the potatoes, and the onions. It was after I started peeling an onion and its multiple layers that my thoughts moved from the stew recipe to living with a chronic illness.

I know what you’re thinking: What do onions have to do with chronic illnesses or pulmonary hypertension? Stay with me.

Humans are complicated creatures. We’re constantly putting on new layers or shedding different skins depending on what life brings us when we go outside our front door (and I’m not just talking about the weather forecast). Whether intentionally or not, we wear layers in our relationships, in our careers, with our personalities, and with others we encounter throughout life.

If we are lucky and we get comfortable enough with somebody we will peel off a few layers here and there to find something with the potential to grow into deeper friendship or more meaningful connection. Layers also can serve as protective barriers. Instead of shedding them and becoming more open, we add on layers and close ourselves off to the world around us.

Throughout my life I have worn various layers, adding or subtracting as needed to help me manage whatever challenge or hurdle that was in front of me. One of the reasons I enjoyed performing theater in school while growing up is because I could put on a character — a layer — and express myself through the life and personality of that role.

It goes without saying that I never anticipated playing the role of a person living with pulmonary hypertension, or that was I prepared for the layers that come with such a life-changing diagnosis.

Pulmonary hypertension is a rare disease that affects the heart and lungs. While there is no cure, there are a variety of medications and treatment plans my fellow PHighters and I use to manage this chronic illness on a day-to-day basis. I know one component of managing PH is dealing with its different layers that can affect my day-to-day activities. There are the physical ones, including what my energy level is like when I get up, how my oxygen levels are faring, and how much exertion I will be able to handle on a given day. There also are the mental or emotional layers, such as how my fluctuating anxiety will affect my ability to multitask at work, whether I will have to explain my oxygen concentrator to somebody, and the emotional exhaustion that often accompanies a chronic illness.

My immediate life post-diagnosis was full of layers. The Sunday after I came home from the hospital, I was surrounded by a group of loved ones and yet I felt a bit removed, as if I was just observing the conversation around me. These were some of my closest friends, but I could not escape a sense of loneliness since no one else shared my diagnosis. That day, I could feel myself putting on some layers. Still very much an unknown entity to me, despite the war it had raged inside my body, I truly was not prepared to talk about PH with many people beyond those in my inner circle. I would say, “I’m fine” or “I’m ok,” or that I was glad to have some downtime to rest, anything to downplay the immense uncertainty I was feeling. It was just easier to put on another layer for the time being.

As the days rolled together and each morning became another morning I woke with PH, I realized I could stand to lose a layer or two (and not just because the weather started warming up for summer). I had read stories of other young people navigating lives with PH and I researched as much as possible to learn about this rare disease. I also began attending my pulmonary rehabilitation sessions, and it’s nearly impossible not to peel a few layers when you’re working out in a room full of other patients with their own health struggles.

Of course, sometimes when you peel a layer, just like an onion, there might be tears. These tears can be painful, joyful, or bring relief. I recall sitting in a coffee shop with a friend a few months into my diagnosis. While swapping life updates I decided to peel off the PH layer; recounting my hospitalization inadvertently lifted the ducts in my eyes. The tears crashed like a tsunami.

Looking ahead, I imagine I will peel more layers and add on a few extra when the situation warrants it. I feel like this is the case for many people, regardless of whether they are managing a chronic illness. Thankfully, after the layers are peeled (and if tears are shed) there is delicious beef stew to savor.

Follow Mike on Twitter @mnaple.

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.