Mariah Hillis, on Going to the Beach With CCHS and Scoliosis

Mariah Hillis Cover

Mariah Hillis loves the summer. For the 21-year-old, summer represents trips to her family’s cottage and time spent by the water. But she can’t help but feel her disability become more noticeable as the temperature starts to climb.

“In the heat of the summer, dressing how I want to dress, I suddenly am very aware of how different I really am and how much of an impact my medical [equipment] has on my physical appearance,” Hillis said.

Hillis, a student in Saskatoon, Canada, lives with scoliosis and congenital central hypoventilation syndrome (CCHS) – a rare disease that affects breathing. Because of CCHS, Hillis lives with a gastrostomy tube (g-tube) and tracheostomy (trach). In the summer, without layers and sweaters, Hillis knows those around her can see the outline of her g-tube and the drainage gauze around it. Her trach, too, becomes harder to hide.

“You never [see] people like me, people with g-tubes, trachs, and a physical disability on the cover of magazines,” she said. “[Magazines] excluded us for a long time. I thought that people like me weren’t allowed on the beach because we could never look like what was on the cover of those magazines.”

Hilis doesn’t let her conditions limit her from enjoying the warm weather and summertime activities, but they do give her pause when it comes to her wardrobe.

“The first time my little brother noticed my scoliosis I was wearing this tight tank top,” Hillis said. “Mariah, what’s wrong with your back?” he asked as he ran his little finger down her spine and over her curvature.

Hillis is constantly aware her summertime outfits may show people more than she wants them to see. “I rarely wear a bikini to the beach because I don’t want someone to see my tube and tell me the way that I eat is weird or disgusting,” she said. “I’m afraid all the time at the beach. I have to choose between feeling comfortable and eating, and choosing what I want to wear and what keeps the staring at bay. ”

At the end of the day, Hillis doesn’t want to choose. She just wants to do what every other 21-year-old wants to do at the beach – get a tan.

Read More: This Is What It Looks Like When You Feature Disabled and Chronically Ill People in Magazines

Next: Yvonne Evans-Nevin on How Ehlers-Danlos Affects Her Appearance

Find this story helpful? Share it with someone you care about.

Related to Rare Disease

Multiethnic group of young people putting their hands on top of each other. Close up image of young students making a stack of hands.

15 Things People Affected by Rare Disease Wish Their Friends Knew

One of the most challenging aspects of living with or having a loved one with a rare disease is communicating how it impacts your life to others. After all, how do you explain something that even some doctors have never heard of? How do you make someone understand what they can’t see clearly on the outside? [...]
Crowd of women celebrating

We Are the Sisterhood of Mothers With Medically Fragile Children

We are a sisterhood that we never imagined being a part of and never wanted to be in. Yet, we are a sisterhood united in caring for our children and helping them meet their highest potential. Most of us are at home, unable to meet due to the demands of our children’s needs. Our relationships [...]
Closeup of Union Jack flag

To England's Future Prime Minister After Brexit: Please Don't Forget the Rare Disease Community

Dear Mrs. May, Firstly I would like to extend my congratulations on your appointment as the next prime minister. I am of course aware of the significant challenge you are now facing in leading the UK through the separation process from the EU. I am contacting you now, to ask as part of this separation process, that the relatively [...]
doctor with hand on patient

To the Experienced Hospital Staff Member Who Couldn't Accept That I'm Rare

I sit on a hospital bed — vulnerable, shaken by how unwell I became, waiting for your guidance to prevent this medical emergency from happening again. I am an unusual case. Rare. “Interesting” (which I have learned is never good in a medical sense). I have been told after months of medical emergencies that conventional [...]