themighty logo

Learning to Accept the Chronic Nature of My Illness

When I was first diagnosed with vasculitis, I was frankly relieved. I had gone 15 months without any answers from doctors and not understanding what was happening to my body. Four months later, the relief has passed, and I am struggling mentally to accept my diagnosis.

I dropped out of McGill University in December 2017 to seek better care and figure out what was causing me to be in excruciating pain and waste so much time in ERs and short stay units. This was the hardest decision I had to make, as all throughout high school, I was an overachiever who spent many sleepless nights trying to obtain excellent grades. I was not able to be that same student in university: I was plagued with excruciating hives, numbness, joint pain and difficulty breathing.

After I left university, my family went on our annual trip to Puerto Vallarta, where I expected that I would be able to relax. Unfortunately, my body had other plans. On my birthday, December 26, I had broken out in hives everywhere. The next day, things had gotten even worse, and I was hospitalized for a week. Medically, it turned out my inflammation levels were in heart attack range, which as a 20-year-old was surprising to hear. Even though I felt and was extremely ill, looking at myself in the mirror was more painful than how I was feeling. I do not consider myself to be occupied by my appearance or narcissistic, but seeing my face swollen beyond recognition and being covered with red welts made me want to cry. Fortunately with steroids and other medications, I was able to resemble myself again and lower my inflammation levels.

There was a silver lining. When I was in the hospital, the doctors took a biopsy, which confirmed I had vasculitis. My road to feeling better and trying to regain my normal activity levels was difficult. I was on a medication called prednisone, a steroid, which reduced my inflammatory levels, but at a cost. This drug caused me to feel extremely fatigued, on top of how tired vasculitis made me, and have extreme mood swings. I felt like I had no control over my emotions whatsoever. In March, I had blood drawn to study the state of my vasculitis. My doctor emailed me the next day, and, miraculously, I was in remission.

This lasted only three weeks.

In early April, I received information relating to a traumatic experience that was extremely triggering. My stress levels could be compared to that of me when I had to take a final worth 75 percent not long after a hospital visit when I was really sick. Two days later – my vasculitis completely relapsed.

I did not want to live anymore. Suicidal ideations hit me like a wrecking ball. I was hospitalized at a high security hospital for a week because I was deemed to be at risk to end my life. There, I learned to accept my reality. I had a chronic illness, and that unfortunately meant treating my vasculitis would have to be ongoing. I had to focus on managing my illness, not bringing it to remission, so I would not be devastated if my vasculitis relapsed.

My life with vasculitis will be a journey, and it is not one I will try to end.

Photo by Riccardo Mion on Unsplash