Greetings! If you’re reading this post you most likely are: Living with pulmonary hypertension; have a loved one, family member or friend who is fighting this rare disease; a healthcare provider; or have joined the fight to find a cure in some advocacy or research capacity. Whoever you are and however you landed here, welcome to this space.
My name is Mike and I’m a 30-something living in Washington, D.C. I met my PH diagnosis in April 2016, and it has been a fraught relationship since day one. More than “it’s complicated,” I would say, “it’s exhausting!” My PH is considered idiopathic, so doctors have no definitive understanding of what is causing the disease. They just know it’s in me. It can be controlled, but not killed off completely. There’s no “Mortal Kombat” conclusion to this fight.
But that doesn’t mean you don’t suit up for the battle.
This initial entry has been months in the works. Plagued with writer’s block that produced many fits and starts, I didn’t know what exactly I wanted to say. I felt unsure about what I could add to the conversation. I already had written about the journey to get my PH diagnosis (you can read about that here), but surely I have something else to say beyond the struggles I faced just to get to the place I am at today. As a communications professional, I believe it’s important to offer one’s unique perspective rather than be just another voice in the crowd. Yes, we all are fighting this disease together and there is certainly power in numbers. But we also deal with it differently, as individuals, each with his and her own set of circumstances.
Some patients have been fighting PH for years. Others, like me, are still adjusting to the “new normal,” also known as experiencing breathing struggles all the time. I was at a birthday party over the Fourth of July holiday and I danced only two songs before I had to stop and use my oxygen. Boy, was I sweaty! Some of us are fighting this disease while juggling the responsibilities of parenthood, a job, or taking care of a family member. Some of us don’t like our doctor. Some of us are better advocates for our health than others, while some in this crowd are still learning and testing their limits. Some of us are unable to access certain medications or treatments with or without affordable health coverage. And many of us struggle with the stigma and vanity at play when wearing oxygen in public, yet have an understanding that it is the oxygen that helps us live fuller lives.
I have spent nearly a decade working in political and public policy communications. I love using words and storytelling to create narratives that help advance policy changes that directly affect people’s lives. It’s vital that we create spaces for people — including those living with rare, chronic illnesses — to foster dialogue about their experiences. It’s what helps drive the kind of change and awareness that can lead to new policies, investments in research and, of course, potential cures. Just look at what we’re seeing with the U.S. healthcare debate. On a personal note, I also find myself writing whenever I’m trying to work through an issue or make sense of some of the weirder or scarier things that can happen while walking the road of life.
With all of that in mind, I thought I would take to writing this column. In this space, I will chronicle my experiences with pulmonary hypertension and discuss the different ways that PH can shape someone’s life. Another reason I’m writing this column is to offer a voice as a youngish male patient living with pulmonary hypertension. After my diagnosis, I looked for stories from other people about how they manage living with their disease. The overwhelming majority of testimonies I found were from the female perspective, until I came across a Facebook group started by men to build community among male PH patients. As I wrote earlier, while we’re all in this fight together, it is important to create space to discuss individual experiences. This platform often will offer my perspective as a guy struggling to live with PH.
I named this column “PHighting Words” because when I suit up for battle, I like employing words to fight for my space and to advocate for myself and others. I look forward to cultivating this column as a space for raising awareness — for dialogue about PH, disability rights, advocacy around rare and chronic diseases, answering questions from readers, and learning from others along the way.
Follow me on Twitter at @mnaple.
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.