“I was always the clumsiest kid— collecting bruises, braces, and splits constantly. I was always in a brace or boot and always falling over and getting injured. It became my brand and I frequently joked about how I had the ability to trip over air. Flash forward to now, at age 17, I have multiple chronic illnesses and am physically disabled with a feeding tube and IV fluids that keep me alive.
My bad health started when I was born 2 months early and stayed in the NICU for a couple of months. I was a late walker, had GI issues from an early age, and was always in pain. I began to get episodes of vomiting for a week every couple of months around age 10, which was blamed on anxiety and quickly brushed off much like my joint problems. Middle school to high school, these vomiting episodes and my joint pain began getting worse at a very fast rate. Once again, I was told it was all in my head and the vomiting was due to stomach bugs. This was incredibly frustrating and I often wonder, ‘If I had been listened to earlier, where I would be now? Would my illnesses be less progressed?’
One day mid-summer before my sophomore year, I passed out on a hot day and then began passing out extremely frequently. Around that time, my doctor also finally agreed something was wrong with my constantly dislocating joints and I finally got the diagnosis I had been searching for: Ehlers Danlos syndrome, a connective tissue disorder that causes both joint and internal problems. We brought up the passing out and immediately got a diagnosis of POTS, a related blood flow condition. I quickly started meds and treatment for POTS. I was both relieved and terrified with a diagnosis. I was so scared of my quickly worsening health but also so thankful I could have treatment and validation it wasn’t all in my head.
One day, I had another ‘stomach bug’. It lasted a week of nothing staying down before we went to the ER and received IV fluids. My doctors said it was still a virus and would go away. Unfortunately, the stomach bug never went away and I still am unable to eat. I was diagnosed with gastroparesis, a condition that causes partial stomach paralysis and an inability to digest things. It was incredibly hard to process my previously ‘healthy’ self was suddenly immersed in the world of hospitals and illness.
I began losing weight extremely quickly still and my health continued to worsen. I was also prescribed IV fluids to help with POTS and dehydration. At this point, I was hiding my illnesses from everyone I knew out of pure embarrassment. I continued to go to high school and lived a sort of double life, high schooler by day and patient by night. I missed the majority of the school year yet still hid health from everyone except my close friends. I felt as though health was a taboo topic and something I wasn’t allowed to share.
Meanwhile, I was still unable to eat more than a couple of small bites. In April of 2020, I got an NJ feeding tube placed for nutrition as I was severely malnourished and had lost 35+ pounds. It got to the point where I was unable to function and had to drop out of high school. The feeding tube saved my life and I’m forever thankful for it. The tube went from my nose to my small intestine so it bypassed my stomach and I was finally able to get nutrition. I was terrified— a tube shoved down my nose sounded so uncomfortable (and it was). I was also unable to keep anything down so the tube was the intervention needed. For the first time in months, I finally had energy. I was able to get out of bed and actually… live again. My tube not only saved my life but increased my quality of life as well. I immediately worried about what others would say about the tube. Their judging stares and what people from my school would think terrified me. I’ve come so far since then, and I’m so proud now I’m open about health. I embrace my differences, and I don’t care about the looks I get in public and just smile back at their judgment.
I was also diagnosed with a condition called MALS, compression of the celiac artery. This debilitating condition was part of the reason I was unable to eat (the other being gastroparesis) and it caused severe and constant stomach pain. Receiving this diagnosis was no easy task, as I was told it was ‘too rare’ to even be possible for me to have. Once I was eventually tested, the hospital couldn’t even read my scans and it was sent to Dr. Hsu, a MALS surgeon and specialist. Unlike my other diagnosis which is incurable, MALS had a cure: a major surgery. I received this surgery on September 30, 2020, with Dr. Hsu, the surgeon who diagnosed me. It was a major open abdominal surgery with a year-long rough recovery but I would consider it 1000% worth it. The surgery was incredibly rough and I had to spend 20 days out of state in Connecticut to get the surgery and recover safely nearby the hospital.
I would consider this surgery life-changing in the most amazing way and I’m so thankful to Hsu for fixing the debilitating pain. Being able to breathe deeply and just exist without the constant pain increased my quality of life SO much. Unfortunately, I still have gastroparesis and am still tube dependent but am able to eat small bits of food which prior to surgery was impossible. After the surgery, I began throwing up my NJ feeding tube every single week. I had to go to the ER so constantly they all know my name and I wasn’t getting stable nutrition because the tube was constantly out of place. The constant placements gave me severe medical trauma, which now has been diagnosed as PTSD. I eventually had my temporary nasal tube converted into a surgical tube on my abdomen, which has been so much less traumatic than the nasal tube and less easy for it to flip or come out.
I realized hiding my illnesses was impossible when I first got my NJ tube, which was on my face. I posted on Instagram about illnesses and was terrified. I was met with an OVERWHELMING amount of support. From there, I realized I didn’t need to hide my health. I began posting about it and sharing and it felt so good to just… normalize my life. I found a sense of community with those who dealt with similar experiences. I quickly grew an audience on TikTok and Instagram and educate people about illnesses and disabilities. My goal is to normalize things I had once felt so ashamed of and help those dealing with something similar. My dream is to have the media be more inclusive and educate the world. I’ve always had a love of acting and I want to be an actress and model and show the world you can do anything, even with disabilities and differences. I’ve learned to embrace my medical devices and scars and body and I’m so proud of everything I’ve been through.
Although mostly positive, I receive quite a lot of very cruel messages like, ‘unplug yourself’ or ‘If I were you, I’d rather be dead’ and so many more. The ableism in society is so prominent on the internet and their words hurt so much. I’ve had to learn to brush off their messages and focus on the positive ones rather than the negative and use the anger from the comments to help drive me to educate even more people.
Health is something that shouldn’t be a taboo topic and it’s such a vulnerable thing to open up about but it is so worth it. Self-love with differences has been hard but the support of my followers and friends helped so much and I hope I can make even a small difference in someone else’s life, whether it’s with feeling less alone or learning about something new.”
This story was submitted to Love What Matters by Katherine Hawthorne of East Lansing, Michigan. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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