About The Author: Cheyanne is a blog writer, vlogger, and wife-to-be! She documents her journey living with mast cell activation syndrome, intestinal failure, and other comorbidities caused by Ehlers Danlos Syndrome and compound heterozygous TTC7A deficiency. Her blog page is called Hospital Princess as she “fights to preserve her crown through the highs, the lows, and the hospital gowns.” She also has a YouTube channel where she posts weekly videos about her experience with chronic illness.
Being Labeled A “Patient”
A stranger gazes in my direction. Their eyes are immediately drawn to the central line on my chest and the multiple tubes leading to the backpack holding my infusions. I notice them staring, and our eyes meet. They quickly turn away in embarrassment.
There was once a time I could assume people were staring because they liked my outfit or because they thought I might be cool to talk to. But now, as I roll around in my wheelchair, they fail to see the girl past the feeding tubes, IV lines, drainage bag, and sickly pallor.
I realize these looks are without malice. To most, the medical devices I am using are not seen out of a hospital setting, and they certainly are not designed for the younger population who are meant to encompass the epitome of health. However, that does not make it any less dehumanizing.
Before my illness, I established my identity on many of my interests and abilities like athleticism—I played softball, beauty—my cosmetic collection of makeup, lotions, and beauty products was steadily growing, and food—I was even passionate about veganism and cooking. As my health declined, I had to surrender my softball career. My dreams of a scholarship to college for the sport were replaced with struggling to walk to the bathroom and using a wheelchair for longer distances. Suddenly, severe allergies prevented me from using my favorite makeup and cooking. Gastrointestinal woes interfered with eating the foods I craved. My central line and feeding tube for nutrition and emergency medications dominated what I cherished most about myself.
I felt like a walking, talking IV pole. From the perpetual, awkward stares to others not speaking to me directly (i.e. slowing their speech as if I have an intellectual delay or speaking to whoever is with me instead), I knew others saw me the same way. People were unsure how to approach me, and so consumed with illness, I no longer fit into their world.
Adapting My Identity
With illness such a prominent part of my life, I struggle relating to the able-bodied. I think, "Who would want to hang out with me? What am I supposed to talk about when my life resembles an unceasing sick day?"I awake in the morning, swallow a few pills, connect to my IVs, attend appointments, and then attempt to complete work in between Netflix binges on the couch. I spend approximately 75% of my days in bed. My symptoms influence my every decision. If not careful, I can lose myself in that monotony.
So, I've had to find myself again. Chronic illness does not have to be my life in its entirety. I may not be able to compete with the active lifestyles of my peers, but I can attempt to find at least one non-health-related topic of conversation. Whether I am raving about a TV show I enjoy or sharing the comical tale of something funny my cat did, only speaking of illness is tiring for both parties. I've made it my goal to focus on the other 25%, to discover normalcy in the moments I am less symptomatic. In a way, chronic illness has given me more opportunities to form new hobbies I never imagined doing, like learning to knit via YouTube videos during an extended stay at the hospital.
A huge part of this journey has been learning to accept and be comfortable with my medical devices, which are preserving my life. Having cute, fashionable clothing options that accommodate my central line like the Care+Wear Dual Chest Port Access Shirt gives me the comfort and confidence needed to embrace all parts of me. I no longer have to surrender my dignity in-clinic by undressing for treatments or rigging old t-shirts to suite my line.
I've realized that I will always be perceived as the "sick girl" if I can't view myself as anything different. The medical devices adorning the outside of my body are undoubtedly a reminder of my circumstances. People will continue to make their judgments, as that is just human nature. However, none of that will matter if I am confident enough to embrace the tubes and lines. They are part of me, but they are not all of me. As I stated in a previous post, "I want my hobbies, interests, spirit, and personality to shine through the dark ambiguity of illness."
If you are looking for more resources and support surrounding chronic illness, check out our other blogs:
- Working Full-Time With A Chronic Illness
- 10 Things Chronic Pain Taught Me
- Chronic Illness Guide: What To Pack In Your Backpack
How has living with a chronic illness or other health condition shaped your identity? Let us know in the comments or email us at firstname.lastname@example.org. We love hearing from our community members!