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Losing My Identity To Chronic Illness

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 athleticismI played softball, beautymy cosmetic collection of makeup, lotions, and beauty products was steadily growing, and foodI 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:

How has living with a chronic illness or other health condition shaped your identity? Let us know in the comments or email us at wecare@careandwear.com. We love hearing from our community members!

2 Responses

Kathy Rock

Kathy Rock

October 27, 2020

I can definitely relate to your story. I have lived with stage 4 endometriosis since the age of 16 and I was diagnosed with Multiple Sclerosis at age 29 I have had over 32 surgeries. I was a basketball 🏀 ball player in highschool and college. I was inducted into the basketball hall of fame. I was an at risk highschool math teacher for 22 years. Then in a dime my life changed forever. I had such an ambundance of scar tissue that was wrapping my organs and squeezing them. I had to have a full hysterectomy and colonectony. I have since lost all my female organs, large intestine, appendix, gallbladder and quarter or my bladder. Yet through these difficult times I was able to hold onto my identity as a teacher because it was my passion and it gave me great strength and determination. Unfortunately in 2015 I had and MS attack. I was lost sight in my left eye, I started experiencing speech difficulties, blackouts, and tremors. I tried dealing with all of these issues and remained strong holding onto a positive attitude. Then the bombshell changed my life once again and my MS was so bad that I could no digest food due to severe gastroparesis. We tried exhausting every option with different medications and minor surgeries but ultimately in the end I had to have 95% of my stomach removed. That brings people up to speed to where I am now. Since my stomach surgery I have lost over 100 lbs. The food I was trying to consume could not be absorbed due to the fact that I have no large intestine. I continued to lose weight even though I was following my diet that was designed for me. I went from weighing 265 lbs down to a mere 130lbs and I am 6 feet tall. I has to back my surgeon because I was experiencing numerous symptoms and didn’t understand why. After running many test they determined I was suffering from Malnutrition. I am now on a feeding tube for the rest of my life. I also have to carry the back pack which contains a very heavy bag of TPN and a monitor. I currently have a PICC line and the tubes hanging out for the world too see. They are going to sew in a port. I get laughed at and stared at wherever I go but many people are ignorant. Instead of approaching me to find out what is wrong they walk away like I have leprosy. I’m grateful that I have a service dog because he is a beautiful Huskita who I trained in sign language so many people are in awe of him and it diverts them from paying attention to me. I can’t change the minds of ignorant people. I gain strength from the people who love me unconditionally. I realize I won’t ever be normal again but I am not going to stop living my life. I also have have new hobbies that are more suitable to my energy level. They allow me to express myself in a positive and creative way. I can feel confident in saying I understand what you are going through!!

Evelyn Morton

Evelyn Morton

October 27, 2020

Thank you for sharing your story. You have contributed to people facing chronic illness or disabilities as people first, not just patients. I’m mom to 3 adult sons with disabilities: 2 with autism & one with Downs, who lived with a colostomy for several months. I’ve have great difficulty finding our oldest clothing that doesn’t bag on him, clothing & shoes he can put on by himself. His lack of fine motor skills means he can’t handle buttons or zippers easily & till recently I couldn’t find jeans he could pull up by himself. The zippers on winter coats are impossible for him by himself, so he has “learned helplessness” in many instances…Anyway, we all need better adaptive clothing and accessories. Again, thank you for sharing.

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