Gabby’s Story

UC, RA & POTS

I was 4 when I was diagnosed with Ulcerative Colitis. They had put me on many medication that did absolutely nothing for me until I was finally put on Remicade infusions and everything was smooth sailing from there or so I thought. At age 13 my doctor decided I was doing so well that I got go from every 4 weeks to every 6 week infusions. I thought that was amazing since I don’t have to go to the doctor as often until I was in so much pain. I do dance (mainly ballet) and it has always been my favorite thing to do since I started at age three but since the pain which was in my hip wouldn’t go away I had to stop. I went to many physical therapy places and had to take Tylenol constantly and it reached a point where I could barely walk. Later after an MRI scan it turned out I had Rheumatoid Arthritis in my hip joints. It felt reliving to hear since I had always known it was that even though people didn’t believe me. I had to stop dancing completely and I lost my sense of self. Dance was the only thing I was good at and loved to do. It had always been apart of my life that everyone knows me as “the dancer” and it was really heartbreaking to say goodbye to it. A year later I was feeling much better since I switched back to every 4 week infusions until I had started high school. My school is huge and all my classes are super far away from each other. I had developed some really abnormal symptoms like my heart racing for no reason, dizziness ,vertigo, nausea and all that fun stuff. I when to the doctor and was told that it was anemia and she gave me some iron pills and that was that. The doctor that I saw was not my normal doctor since she was on vacation but when my symptoms didn’t get better she told me it was POTS. It’s a daily struggle since I hide my pain so she’ll nobody understands when I can’t take it anymore and then I break down “you were fine a second ago” they would say. So many times I get so many stupid and unnecessary advice and comments about how I don’t need my accommodations like using the school elevator only used by teachers and staff. I know they have good intentions but nobody understands unless they have been through it too.