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My Chronic Condition Started With a Virus

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To the people who are still not self-isolating, you realize you could end up like me, right?

I mean, I’m sure you’ve heard all the comments about how social distancing isn’t about you. You’ve probably been told to think about your grandparents and those with compromised immune systems, and how by staying inside you’re saving them.

You’ve probably seen them speaking out on social media through hashtags like #WeAreTheVulnerable and #HighRiskCovid19 begging you to stay inside so you don’t infect those of us who can’t fight off the virus. By this point you’ve definitely heard the vulnerable communities talk about how incredibly shitty it feels to hear “it’s not a big deal because only the elderly and sick people will die” over and over like our lives don’t matter.

And I’m sure you’re starting to see more and more reports about how young people are not as invincible as they think and make up a huge portion of the people who are in the hospital because of the virus right now.

But that’s not what I want to talk to you about. Because I get it. I do, really. Being isolated in my room for over three weeks now, out of work, with no income or idea of when I’ll be working again, having all of my projects postponed and struggling to keep my apartment was definitely not something I was ready for either.

But what a lot of young people who think they’ll be fine are forgetting is that the even if you get COVID-19 and survive, the virus could trigger a chronic illness or another health issues that will actually end up making you become one of the vulnerable.

If you’re not familiar with my story, when I was 16 I got infectious mononucleosis. I know you’ve heard of mono, that so-called kissing disease that typically comes from the epstien-barr virus (EBV). Lots of people get mono every year. And unfortunately lots of people, myself included, never get better.

I didn’t know I had mono right away. It actually took over a year before I knew because this was also the same time that the 2009 H1N1 or swine flu pandemic was happening. In fact, swine flu was my original diagnosis.

Part of what led to my misdiagnosis of swine flu was my unusual symptoms: loss of motor skills, confusion, loss of vision and slurred speech just to name a few. It looked like I was having a stroke. My doctors assumed since that pandemic had just started, they had to be symptoms that weren’t well known yet, when in actuality I was having my first hemiplegic migraine.

I was quarantined at home for a couple weeks recovering. During this time, my mom was having a routine surgery and coded during it. Her doctors had no idea why, so they assumed she had contracted swine flu from me and had her quarantined in the hospital for a week until her results came back negative. Turns out it was undiagnosed sleep apnea, but that took years to find out.

Over the next year I went from being a good student who was super involved in after school clubs, played soccer and did endless hours of community service to having to withdraw from school and failing every class my senior year. I got the opportunity to audition for my dream role, but collapsed on stage inches from the edge and had to give up acting for a few years.

Even though we knew I had mono a year after I got sick, it took an additional six years to get my autoimmune disease diagnosis and another year, after watching “Unrest,” before my doctor made the connection.

And during all that waiting and testing and time spent isolated, the life I had before didn’t continue because there weren’t all these companies and people determined to make sure it kept going.

There wasn’t an option for all of your classes to transition online. If you did try to learn online, it wasn’t with your original classes. You had to drop those and switch to new ones. And online classes for the arts were practically unheard of. Your options were to either wait until you got better or give up and move on. I went to three different high schools my senior year trying to find one that could accommodate me. I had to wait until I was 23 before starting college and still didn’t get to finish.

Working from home wasn’t much of an option either. If you were lucky you could find something, but it usually wasn’t a job you enjoyed and often didn’t come with the health insurance you needed. Or they wanted skills and experience that if you were just out of high school, you didn’t have. People weren’t jumping at the chance to help you cover expenses if you lost your income because of illness. And the little help that was there quickly ran out once the realization that this was a long term thing set in.

Same with friendships. Unless they were sick too, you couldn’t count on people sticking around and being OK with Zoom hangouts from the couch over face-to-face socializing. Canceling because of illness or because you were trying to prevent catching something was rude and lost you friends. Most people weren’t so understanding.

And yeah, maybe that won’t happen to you. We have these accommodations now, so we know they can be done. But we knew they could be done before and they still weren’t, so can you really be sure they’ll still be available if you need them after the pandemic is over?

And then there’s all the other complications that come with a chronic illness. It has cost my family and I tens of thousands of dollars in medical bills. I’ve been put on over 40 medications, some of which were immunosuppressents, and I still can’t find one that helps enough to take long term. I’ve had side effects from some of those medications and treatments that I will deal with for the rest of my life. I’ve tried everything from physical therapy and surgery to hypnotherapy and IV ketamine infusions. I was diagnosed with depression, dysthymia, anxiety and began having horrible panic attacks within the first couple of years after I got sick. I’ve even ended up with Medical PTSD after years of mistreatment.

And probably the worst part of all this is knowing that as the COVID-19 pandemic gets worse and resources become even more scarce then they are now, having an autoimmune disease, a blood disorder, being on blood thinners, having asthma and a history of being hospitalized for pneumonia puts me in the high risk category. And because of that, my treatment would not be prioritized. It wouldn’t matter how hard I work to manage my illness and stay as healthy as possible. If it came down to it, a doctor might choose to treat a healthier person who had a better chance of survival because they didn’t have underlying medical conditions.

A few weeks, or even months of self-isolating, seems like a lot now, believe me, I know. I lived like that for six years. But if doing so prevents you from getting a chronic, incurable, lifelong, possibly rare or life-threatening illness — one that could put you in the high risk category next time there is a pandemic — isn’t it worth it?

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Follow this journey on Chronically Overdramatic.

Originally published: April 10, 2020
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