Why I Make an Effort to Keep Up Appearances

By the end of my freshman year of college, it had become a bit of a joke that I would never be caught around campus in sweatpants. While my roommates and peers relished the university lifestyle of casual clothing, I was rarely seen in anything other than a fully put-together outfit. This habit of keeping up my physical appearance has felt like a part of my identity since before I can remember.

I’ve always indulged in fashion and dressing up as a form of art and self-expression, and enjoyed doing it. But I’ve come to realize that I’ve also used my outward appearance as a means of controlling how I am perceived.

Chronic illness can steal a person’s ability to own and celebrates their own body. Because I was forced to relinquish control of my health and, as a result, certain aspects of my physical being, I grasped for something in the mirror that still felt like it belonged to me.

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I couldn’t opt out of the central line catheter in my chest, or the way my lips turned blue in the cold. I couldn’t add healthy muscle to my skeletal figure, or stop my chest from having to work so hard to pull oxygen into my lungs. But I was able to take a few minutes in the morning to put on an outfit I loved — a distraction for others to focus on, rather than my physical struggle.

How I see myself and am seen by others

I’ve had a complicated relationship with my body for years. I think you’d be hard pressed to find someone with a chronic illness who doesn’t have an issue with their self-image.

I’ve had moments of deep adoration for my body, which has worked so hard to sustain me, while also often — too often — wishing for a different vessel altogether. Amid these contradictory feelings, presenting myself and clothing myself have been simple ways for me to escape from the heavier realities of the body I was covering up. And caring for my appearance has allowed me access to the parts of my personhood that I enjoy.

Being able to somewhat control how others view me is an added bonus. After all, nothing says “I’ve got it all together and I’m doing great” like a cute outfit.

In college, while I prepared for a heart-lung transplant and began to suffer from severe heart failure, I stubbornly persisted through my day-to-day life. I always wanted to avoid seeming lazy or tired. When I showed up for my classes in my school’s nursing program, I wanted to prove that I had the energy to be there. And in my mind, personal style and hygiene were great ways to create that illusion.

Some of this was perhaps misguided thinking, or even a bit of denial. I believe being honest and vulnerable about what we are capable of — our energy levels and stamina — are very important for those in the middle of a difficult health battle. And looking back, I wish I had been a bit more realistic about my physical capabilities. If anyone has an excuse to show up to a lecture in a sweatsuit and a messy bun, it’s the person who is quite literally fighting for her life.

Fake it till you make it

Still, I believe the years I spent presenting myself in ways that felt meaningful to me helped me to endure, mentally and physically. Perhaps it had a bit of a “fake it till you make it” effect. If anything, it helped me to protect how much others knew about my health, which is a bit of a privilege with a mostly invisible illness.

I’ve found a better balance these days. Dressing and presenting myself to the world are no longer ways of masking my illness, but rather, ways to celebrate the body that continues to carry me. The difference comes mainly with a change in the intention behind my actions.

I delight in the opportunity to be a put-together, artistic young woman who is also a representative of the transplant and trach communities. There is even a sense of defiance in it. Is there anything braver than beautifully decorating a body that society has led us to believe has less value than a healthy one?

In every way that I boldly put myself into the world as a person with a disability, and as a contradiction about what disability means, I strive to be an example for anyone feeling the loss of their personhood.

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.