How medical devices have influenced my clothing style

Since May, I’d been faced with a challenge familiar to many women: finding the perfect dress for a wedding. Two close friends of mine were married last weekend, and I had the honor of attending the wedding and reciting original poetry during the ceremony.

After my heart-lung transplant in 2018 and the onset of COVID-19 in 2020, my attendance at large events has become limited. But as someone who loves fashion, I quickly get excited about opportunities to dress up.

Unfortunately, the task isn’t always simple. My history of dressing while relying on various medical devices goes way back. At the age of 4, I started treating my pulmonary hypertension with intravenous Flolan (epoprostenol GM), and I’ve been attached to some form of medical device ever since.

I began to feel self-conscious about the devices in middle school. At that time, I was grateful to switch from Flolan, administered with a large pump that required a setup with ice packs, to Remodulin (treprostinil), which uses a smaller pump I could easily conceal in my waistband.

In high school, I became specific about the placement of my central lines. I requested that my surgeons place them as close to my bra line as possible because that was the place I could most easily conceal when wearing swimsuits.

Recommended Reading

June 19, 2024 Columns by Jen Cueva

Summer heat means those of us with PH must remain vigilant

I hoped that my transplant would eventually free me from all the tubes and devices. But my journey has taken a different turn. For six years now, I’ve lived with a tracheostomy tube (trach) and have also been oxygen-dependent. Fortunately, my oxygen runs through my trach, leaving my face free. On the downside, a trach is nearly impossible to conceal.

My preferences for dressing with a trach have been simple but specific. Since its placement, I’ve normally worn only crew neck tops and dresses to events. Leaving a large space between my trach and the top of my shirt feels vulnerable. With my trach completely uncovered, an island alone on my throat, I always feel that it’s capable of drawing much more attention.

That’s not the greatest setback I could face in life. I can find plenty of clothing options that suit this requirement while also meeting my favored style. I make some small sacrifices, but nothing that plagues my mind.

Stepping out of my comfort zone

However, dressing for an occasion becomes more complicated. When I began shopping in May for a dress to wear to the wedding, I’d scroll for hours, passing by most options simply because of the cut of the neckline.

After ordering and returning several options and knowing that the deadline for the event was approaching, I decided to expand my search. After all, I wouldn’t know many people attending, and it felt like an opportunity to experiment with something I had no logical reason to be against, aside from judgments of my own creation.

I ordered a few dresses that I would’ve never otherwise considered. Most didn’t work, but one suited me in both style and fit, which can be a challenge to find for anyone. I went back and forth. Having my trach completely uncovered and on display was nerve-racking, but the dress itself was lovely, and frankly, I was running out of time.

Ultimately, I wore the dress, ending the night with mixed emotions. The truth is, I know no one else cares what I’m wearing. I believe that’s a reality for anyone, not just for those of us who are visibly disabled. Most often, the things that unnerve me will likely never even enter someone else’s mind.

Throughout the night, I didn’t feel as if anyone cared about my trach more than they would’ve with it partly covered. And it was only in looking at pictures of myself once I got home that I became self-conscious. When doing so, I was taken aback by the reminder that my trach was more visible than it had felt throughout the evening, more visible than it’d been since its placement in 2018. But at the same time, I want to work on believing that my visible trach isn’t really a negative.

These feelings are just a tiny portion of the mental acrobatics I go through regarding my self-image as someone living with a visible illness. And while I have no plans to depart dramatically from how I’ve been dressing, I’m glad I opened myself up to the risk. It was a good reminder that none of it is as serious as it can feel and that, in these situations, there’s very little to lose.

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.