Living through the pandemic immunosuppressed
A lot of the people I’ve interacted with that have a medical condition found out in an alarming manner – a suspicious lump, a traumatic experience that turned out to be a blessing in disguise, an unexpected call from the doctor – but for me, it was months of confusion, overlapping symptoms, normal test results and a lot of self-doubt.
Growing up I was a pretty healthy kid. I barely caught the common cold, let alone anything more severe like the flu. But throughout my four years of high school, I was in and out of the hospital. I followed up with five specialists and spent more time in a doctor’s office than at school. And all of this started because I dismissed the first sign that anything was wrong to begin with: fatigue.
I struggled to figure out what was going on. All I knew was that I was always tired and my body ached. For the first eight months, most doctors refused to believe there was anything wrong with me. They tried to convince me that I was just really anxious about starting high school and that often, as a result of the nervousness, the body can react in ways that would suggest an underlying condition or illness. After a while – despite knowing that I wasn’t nervous about school – I too began to doubt whether all of this was anything more than anxiety and panic attacks. After all, I looked perfectly healthy on the outside. The problem with invisible illnesses is just that – you can’t see them from the outside and so we assume that no problem exists.
Between the ages of 15 and 17, I would be diagnosed with four autoimmune disorders: ankylosing spondylitis, fibromyalgia, juvenile rheumatoid arthritis and uveitis. I was also diagnosed with chronic migraines my senior year of high school.
Since then, a lot of my life has been learning to adjust to the quirks associated with my various ailments. For the past eight years, it’s been very hit or miss. I either wake up feeling ready to tackle the day, or I have to work myself up to even get out of bed.
Over the years, I’ve learned how to manage my symptoms. I created a routine for myself and familiarized myself with the foods and habits that trigger my disorders. Unfortunately, the pandemic has brought the most normalcy I’ve felt in eight years to a crashing halt.
Saturday, April 18, marks one month since I last left my house. I haven’t even gone out for a walk around my neighborhood. My body has been utterly uncooperative for the better part of the last month. I’ve had migraines that have lasted as long as two weeks, my stomach feels like it’s throwing a tantrum most days, my uveitis has flared up five times in the past three weeks and the back pain is near constant.
The pandemic instilled this notion that we should keep a firm grasp of the things that are still in our control. For many, that meant purchasing and hoarding anything and everything they could get their hands on at the grocery store. While I understand and can empathize with those that wish to control what they can, panic buying has made it increasingly difficult for me to stick to the meal plan I know works best for my body. The majority of the last month has consisted of resorting to food I know I shouldn’t be eating because it’s all that’s available to me.
My parents also have pre-existing conditions and their age places them at higher risk. I’d be lying if I said I don’t feel guilty every time my mom braves the trip to the grocery store and the pharmacy to get my medication because somehow, my immune system is far worse than hers.
In light of the pandemic, software developer Ben Albahari created solenya.org/coronavirus, a calculator that allows people to estimate their risk and rate of survival should they contract the virus. It is calculated under the assumption that 10% of the population will get infected, 1% will die from it, that you have not been tested for the virus and you are not showing symptoms. For a female between 20-29 years of age with no pre-existing conditions, no social contact, good hygiene and average accessibility to health services, the chance of not surviving is 1 in 33,069, but for me, it’s 1 in 3,890. While that’s still a high probability of survival, it’s also daunting to see how drastic the difference is between me and my best friend.
I am thankful that despite this, I am able to receive my medication, have the comfort of knowing my dad is out of harm’s way working from home and have a home in which I am safe and still have access to all of my doctors through online platforms and phone calls, a luxury many people have lost in this time.
Yet, I urge everyone who goes out to purchase essential items to please be mindful of what they purchase and the shoppers around them, as looks can be deceiving. I am incredibly privileged to have a mom who is willing to go out on my behalf so I do not have to put myself at risk by leaving the house. But there are many people living with autoimmune disorders or other pre-existing conditions that do not have someone who they can rely on, and those people fear for their lives every time they step outside.
Drashti Mehta is a junior journalism major with minors in political science and public relations. She currently serves as the features editor for The Hofstra Chronicle, hopes to raise awareness about invisible illnesses and can be found on Twitter @drashmehta.
