Wrestling with body image and dysfunction during Pride month

How my perception of my looks can interfere with my living better with PH

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by Mike Naple |

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When the doctor used the phrase “your deformity,” I immediately braced myself for the remainder of the appointment. I compartmentalized the comment for the moment and would deal with how I felt about it at a later date.

I’d raised the possibility of my getting a lung transplant, which I knew to be a course of treatment for some patients with pulmonary hypertension (PH). I asked about it in the context of my scoliosis and how it altered the physiology of my chest cavity, where the body holds the heart and lungs.

Whether a transplant could be on the table is not important, at least not right now. The more immediate takeaway after that appointment was that word choice the provider used and how it scratched at feelings about body image that I try to keep buried far beneath the surface.

Growing up short and with scoliosis, as well as closeted about my sexuality, meant grappling with varying perceptions of conventional expectations around body image and masculinity. While I didn’t necessarily feel that I always measured up to the stereotypes of American young male attractiveness thrust upon us in popular culture, I never let what I lacked define me as a person. I did my best to recover from any emotional lows brought on from peers’ name-calling, enough to continue participating in my chosen extracurricular activities.

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Transplant and Trauma: Healing My Relationship With My Own Body

Many members of the LGBTQ+ community struggle with physical, emotional, and mental health issues associated with body image. A recent USA Today article, published to coincide with Pride month, features individuals sharing their personal experience and how they’ve responded to negative feelings and dissatisfaction about their bodies and how they’ve tried to access care. “The queer community today faces unique societal pressure to look a certain way thanks to the ongoing influence of social media in the microcosm of LGBTQ spaces, both online and in real life,” the article states.

The story reminded me of that doctor appointment like a flashbulb camera. I recalled other moments when negative thoughts about my body image fueled feelings of rejection, inadequacy, and unworthiness — as if I were glowing white hot with shame.

Functionality and body image

I came out and received a PH diagnosis, in that order, over the span of a few years. As a disabled queer individual, I’m often analyzing how these identities and chronic illness overlap and show up in my life. It can be hard to detangle negative feelings about body image that are informed by the multitudes of my being.

In terms of that intersectionality, it’s more than just how my body compares with problematic and stereotypical standards. It’s also about body functionality. Pulmonary hypertension and its symptoms can wreak havoc on our bodies — with shortness of breath, rapid heart rate, exhaustion, muscle aches, and fluid retention. How our bodies respond alters functionality, which can affect what activities we’re able to do on any given day.

A recent study published in Clinical Research in Cardiology found that more than half of PH patients surveyed experienced symptoms while engaged in sexual activity. A PH News article reporting on that study highlighted findings that showed “sexual dysfunction occurred more often in men and women with PH than in the general population.” The study also touched on how medical devices, including an intravenous pump, can contribute to “low self-esteem and an impaired body image.”

Functionality in turn contributes to how we feel about our bodies overall. Chronic illness and rare disease can add another voice to the choir in our head singing from the hymnal of harmful, preconceived notions of what we’re supposed to look like compared with others. This feeling rings true for me when fluid retention contributes to my weight gain or when my body struggles to do something as simple as taking a walk through the neighborhood without gasping for breath.

Putting comfort and health first

Pride month is a reminder to all of us to celebrate our whole authentic selves.

I’m not always comfortable or content with how my body looks or functions. But in a world where illness, disability, and nonheterosexual folks still make some people uncomfortable, I’m learning to put my comfort, health, and well-being first. That means using supplemental oxygen in public when I need it to manage a PH flare-up, advocating for myself and patients to get the care they need, and working to create more inclusive spaces within the LGBTQ+ community.

Follow Mike Naple on Twitter: @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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Fay avatar


Thank you so much for posting this article. I can relate!


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