I am 20 years old, and I have lived in the Aurora-Centennial area for the past six years. Before that, I lived in both California and North Carolina.
I was born with autoimmune hepatitis and primary sclerosing cholangitis. Both of those created a lot of other medical problems with my body and ultimately cirrhosis, which led to my first transplant at the age of 9. When I was 16, I was rediagnosed with the primary sclerosing cholangitis and received a drain to open up my bile ducts for six months while still in school. I was then, again, at 18 rediagnosed … meaning not one but both have come back and the first transplant was not a success. I am currently at stage 3 cirrhosis, and when I reach stage 4, I will be listed for my second transplant.
I get exhausted so easily that some days even running an errand to the supermarket is all I can do or some days I can’t even leave bed … It feels like I spend more time in a hospital than my own home sometimes, and the nurses know me by name.
I have been bullied since I could remember, starting from elementary school … I went around with an oxygen tank … I wasn’t able to play at recess. I would easily snap a bone in half because I had no bone marrow … After my transplant, I got a bit of a second chance and was able to feel like a “normal” kid and did not have many problems.
When I got rediagnosed in high school, I was left in the dust once again. I’ve been accused about lying about my illnesses, my shirt being pulled up to make sure the scars from my surgery were real, and many of my friends left me ... I lost many, many people my entire life due to being sick, but I have also met true friends and leaned on family in those times.
Having my mom beside me each step of the way was what mostly kept me from going completely downhill … For every doctor appointment, every surgery, every sick day, she never left my side or made me feel any less lovable just because I lived with this burden ... She did recently pass away this August, so since then I have been more lost on this journey because it feels as though I am doing most of it on my own now, but I do know she is also guiding me in spirit.
I wish people knew it’s not our fault. We didn’t ask to be sick, and it is hard enough to have this on our plate alone. We could use some support — in the end, we’re people too and pretty cool if you can get over times we would just have to take it easy.
I also wish people knew that people don’t have to look ill to be ill. If I’m dressed up, makeup on, nobody would ever be able to tell I am as sick as I am. But on the inside, I am constantly in a lot of pain and feel gross … It would be nice to know that you still love us, even when we’re in a hospital bed.
What people might not know about me is that I’m a pretty solid cook. I went to chef school as a kid. Shout out, Young Chefs Academy. I’m also half-Pakistani, so I can throw down some good Paki food as well. I like cooking and I’m pretty good at it, but I still am in college kid mentality and would rather microwave everything.
If you would like to suggest someone for My Name Is …, or if you would like to be featured in the segment, contact Ellis Arnold at firstname.lastname@example.org.
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