My Chronic Illness Story

My Chronic Illness Story

Written By: Ila Oxman

Growing up I always had health complaints and was told they were all related to anxiety. Starting at the age of 7 I would have dizzy spells, awful stomach aches, extreme fatigue, and racing heart rate. Of course these symptoms caused anxiety, but I now know they were not caused by anxiety. In middle school my knees started to partially dislocate. I went to physical therapy for a while and then the issue wasn’t addressed again. I would break out in rashes from clothing tags and showers. As I got older I learned to live with being dizzy, itchy, and my joints feeling like they were on the verge of dislocation. In high school I would have random fainting spells, but not very often. I also would fall asleep in every class and was diagnosed with Narcolepsy.

In college I started passing out more frequently and went to a cardiologist. I explained to the cardiologist that I had a heart rate of 200+ beats at times.

They said that it was anxiety. I learned to live with randomly passing out and being short of breath for 4 more years. I graduated college in May of 2021 and began getting my Masters in Applied Behavior Analysis. Shortly after, in February 2021 I started a wonderful job working at an early childhood clinic. Unfortunately I passed out on the 2nd day of my job. That week I went to the hospital twice via ambulance because I couldn’t stand up without passing out. I would sit on a blanket and my mother would drag me to the bathroom. My blood pressure was low and my heart rate was all over the place. I was finally diagnosed with POTS after having a tilt table test. Sadly, the cardiologist who performed the test said that my case was too complicated for him to treat.

My parents and I researched every specialist in the country. The earliest I could get in anywhere was January 2024. Somehow we found a specialist that would see me and it seemed like everything was going to work out. We were so wrong. This practice had little intention of helping me. They refused to see me until I completed over 15 tests and gave over 19 tubes of blood. This process took over 60 days. They didn’t evaluate me prior to even see if these tests were necessary. We finally left the practice because the doctor wasn’t even in the picture! Although, I was able to get my diagnosis of Ehlers Danlos Syndrome and Mast Cell Activation Syndrome. Eventually I found a cardiologist that was willing to take my case. I am far from 100% and there are many days where I cannot get out of bed.

As I’ve been working on doing everything in my power to feel better I’ve started doing a few things. I started a YouTube channel where I share my story and what life can be like with multiple chronic illnesses. I have also started creating pins, stickers, clothes etc to spread awareness for chronic illness. Creating art about my illness has helped me take my sad and negative energy and turn it into something that can help not only me, but I hope others as well.
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