As I navigate adulthood, I find many opportunities for celebration. Graduating college, surviving a pandemic and second economic collapse, growing my first garden, moving in with my partner, pushing through therapy, and even baking the perfect loaf of bread. But one thing I’ll always be proud of myself for is simply making it this far. There were times when I couldn’t imagine what
it would be like to take a walk around the neighborhood, to go on an incident-free trip to the beach, to make it through a full night’s sleep, to go to school without pain and embarrassment, to get close enough to someone to fall in love.
I’ve lived with IBD all my life, having been misdiagnosed with Ulcerative Colitis at age five and enduring a subsequent decade of invasive tests, exploratory procedures, medical neglect and failed treatments. My adolescence was spent in alienation, anger and depression with low mobility, excruciating pain and lots of secrets to keep. My last year of middle school, I was finally correctly diagnosed with a similar form of Inflammatory Bowel Disease―Crohn’s―a chronic autoimmune disease, considered rare and affecting less than 200,000 Americans a year.
By the time I was a freshman in high school, my doctor told me something I never expected to hear, that he was out of ideas. I had tried every steroid, immunosuppressant and biologic, some only available to adults at the time. I was even forced to try alternative medicine: magnetic therapy, acupuncture, herbs, oils, and restrictive diets, again to no success. I was growing weaker, had dropped to 70lbs, and was in so much constant pain I couldn’t stand up straight. I was running out of time. I was left with a last resort option―to have a life-altering surgery and use a permanent Ileostomy.
The change was very difficult to grapple with at 15, but now, 10 years, three surgeries and no colon later, I am so grateful to have the quality of life I always dreamed of as a child. I immediately reached surgical remission lasting 6 years. As is typical of Crohn’s Disease’s unpredictable nature, I came out of remission during college. I experienced a series of flares, resulting in multiple trips to the E.R., intestinal strictures, using a wheelchair for a few months, and having more intestinal surgery. Being an adult on my own, I finally understood the financial burden of being sick.
The cost of hospital stays, operations and doctors visits was far more than I could afford, even with insurance. I went into medical debt for years before being able to pay it all down. I am now on a medication that has put me back into remission, and I’m not suffering from the constant stress and fear of getting through the day. Instead, I worry about being kicked off my parents’ health insurance 4 months from now and no longer being able to afford doctors visits, preventative procedures, ostomy supplies, or even the infusion therapy keeping me in remission. I worry about another flare up and the cost of hospitalizations and medicine. I worry that I’ll be forced to sacrifice my health and safety.
When you’re fighting for your future, paying for healthcare should not be a part of the stress. It’s hard enough just being sick. Support Medicare for All. Make sure you are registered to vote. Request your ballot as soon as possible and then immediately send it back, or better yet, deliver it in person. Make your voice heard and then hold your representatives accountable so we can guarantee healthcare for those of us who can not wait.
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