When it comes to chronic illness, I’m not passing through
Like Lena Dunham says, it's more like living in a city I 'pay taxes in'
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There’s a sentiment that a book finds you at the right time in your life. Sometimes, when you have a chronic illness like pulmonary hypertension (PH), that book finds you when you’re sitting on a bench outside of a hospital.
Recently, that book for me was “Famesick,” Lena Dunham’s new memoir. I had just finished getting a CT scan of my lungs. It was a warm Friday morning in July and I had started listening to Dunham’s book on audio while I waited for my ride to arrive. If you’re wondering, Dunham narrates the audio version herself; I thought that would be a better way to experience this particular book.
When I got home, I listened to it practically all day. While I would consider myself a voracious reader with an eclectic taste for all kinds of stories, I was surprised by how much Dunham’s narration held my attention. One line that continues to resonate is when she describes her life with chronic illness. She writes: “At this point I was starting to understand that illness wasn’t just a town I was passing through, but a city that I was going to pay taxes in.”
Passing through emergency rooms
Prior to getting a PH diagnosis, every health scare certainly felt like I was only passing through different emergency rooms and leaving with no definitive information about what was happening in my body. I’ve been hospitalized multiple times for high-altitude pulmonary edema. Each time, the medical teams pumped me with oxygen for a few days before sending me home to resume my normal routine. Reflecting on them now, that “passing through town” sentiment rings true. I would feel pretty healthy between episodes, as my breathing wouldn’t become an issue unless I was at a higher altitude.
My last hospitalization for high-altitude pulmonary edema was in 2012. I wouldn’t get tested for PH until 2016. My health during those four years was mostly stable. In my mind, I was still a person who was passing through rather than buying property on Chronically Ill Boulevard.
Inhaling new medications and eating more payments
The 10 years since my diagnosis haven’t been a cakewalk, by any definition. There have been COVID-19 diagnoses, a few more hospitalizations, including one in 2024 that I’m still recovering from, and many little life adjustments along the way. In the same breath, there has been a measure of consistency with my quarterly checkups and the medications prescribed as part of my treatment plan. That stability started to falter when I began needing to use my portable oxygen concentrator more regularly, and I struggled with some pulmonary tests during a June appointment with my pulmonologist.
These moments when chronic illnesses flare up and it feels like my health is worsening are tough. The shortness of breath and fatigue leave me exhausted, but so do the added stress and feelings of doubt of a thousand hypothetical questions and scenarios running through my head. Consulting with my care team and putting a plan together does help to squash all that anxiety, though.
Following the CT scan, my doctor prescribed a new inhaled medication to address my recent breathing challenges. Adding it to the mix was an acknowledgement that something already wrong in my body was potentially getting worse. The new medication also reminded me that I do, indeed, now live on Pulmonary Hypertension Place, population me. And, of course, the copays, out-of-pocket costs, and specialist appointments are the taxes we pay to manage chronic illness.
No longer just passing through, I’ve renewed my lease for another decade of living with PH, and I have the receipt payments to prove it. Maybe it’s time to buy some property.
Follow Mike Naple on X @mnaple or Bluesky at @mnaple.bksy.social.
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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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