How medical devices have influenced my clothing style

Since May, I have faced a challenge known to many women: finding the perfect wedding dress. Two of my close friends got married this past weekend, and I had the honor of attending the wedding and reciting original poetry during the ceremony.

After a lung and heart transplant in 2018 and the emergence of the SARS-CoV-2 virus in 2020, my attendance at large events was limited. But as someone who loves fashion, I quickly get excited about the possibilities of dressing up.

Unfortunately, the task is not always easy. My history of dressing while using various medical devices goes back a long time. At the age of 4, I began treating pulmonary hypertension with intravenous Flolan (epoprostenol GM) and have been attached to some medical device ever since.

I started feeling self-conscious about devices in middle school. At the time, I was grateful to be able to switch from Flolan, which is administered through a large pump that requires ice packs, to Remodulin (treprostinil), which uses a smaller pump that I could easily conceal around my waist.

In high school, I detailed the location of the center lines. I asked my surgeons to place them as close to my bra line as possible because that was the easiest place for me to hide when wearing swimsuits.

I hoped that my transplant would finally free me from all the tubes and machines. But my journey took a different turn. I have been living with a tracheostomy tube (windpipe) for six years and am also dependent on oxygen. Fortunately, oxygen flows through the trachea, leaving the face free. The disadvantage is that it is almost impossible to hide the trachea.

My trach dressing preferences were simple but specific. Since its inclusion, I usually only wear crew neck tops and dresses at events. Leaving a large space between the windpipe and the top of the shirt makes you appear vulnerable. With the raft completely exposed and the lone island at its throat, I always feel like it’s capable of attracting a lot more attention.

It’s not the biggest setback I could face in life. I can find plenty of clothing options that meet these requirements while still being my preferred style. I make a few small sacrifices, but nothing that would rack my brain.

Getting out of your comfort zone

However, dressing for the occasion becomes more complicated. When I started shopping for a wedding dress in May, I browsed for hours, passing most of the options simply because of the low neckline.

After ordering and returning several options, and knowing that the event date was approaching, I decided to expand my search. After all, I didn’t know many of the people attending the event, and it seemed like an opportunity to experiment with something that I had no logical reason to object to, other than judgments about my own creation.

I ordered several dresses that I would never have thought of otherwise. Most didn’t fit, but one suited me in both style and fit, which can be a challenge for anyone. I went back and forth. It was nerve-wracking to have my trachea completely exposed and on display, but the dress itself was beautiful and honestly, I was running out of time.

I finally put on the dress, ending the evening with mixed feelings. The truth is, I know no one else cares about what I’m wearing. I believe this is a reality for everyone, not just those of us who are visibly disabled. Most often, the things that upset me will probably never even occur to anyone else.

I didn’t feel like anyone cared about my trachea the whole night, more than they would have if it had been partially covered. And it wasn’t until I got home that I looked at my photos and felt embarrassed. Doing so was a startling reminder that my trachea was more visible than it had been all evening, more visible than it had been since I got it in 2018. But at the same time, I want to work on the idea that my visible trachea isn’t really a negative.

These feelings are just a small part of the mental acrobatics I go through when it comes to my self-image as someone living with a visible illness. And while I don’t plan on radically changing the way I dress, I’m glad I opened myself up to the risk. It was a good reminder that nothing is as serious as it may seem, and that there’s little to lose in these situations.

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Note: Pulmonary Hypertension News is solely a news and information website about this 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 care 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 generate discussion about issues related to pulmonary hypertension.