Living with Chronic Illness in the Midst of a Global Pandemic

I've been trying to write this for two months now and every time I sit down to write I'm left wondering, "How do I even put it into words?" Honestly quarantine has been a rollercoaster of emotions. There's been moments of pure joy and happiness, but there's also been a lot of really lonely moments.

Having a chronic illness before COVID was already challenging and often very lonely, but COVID has amplified the struggle 100x. I can't even begin to tell you the number of people who have told me, "COVID isn't real," or, "It's a government conspiracy." I'm not here to debate your thoughts on the issue, I'm simply here to say people with chronic illness are struggling IMMENSELY now. How do I know this? Because I am one of those people. 

As a 20-something year old with Lupus, a chronic autoimmune disease, I was already living a life drastically different from my peers. Chronic pain, extreme fatigue, brain fog, and a plethora of other symptoms consume most of my days. Symptoms come and go depending on the day, the weather, the amount of sleep I have (or haven't) gotten. In many ways my body is not my own. This disease owns my body, doing with it what it wants, leaving me to deal with the aftermath. At times it's a very lonely existence because very few of my friends understand what it's like to cope with a chronic illness as a 20-something year old. 

When COVID cases started tallying up across the country I knew this was something we I wouldn't be able to ignore. In the span of a few weeks I went from getting up, working out, and going to work, to staying at home 24/7. I'm very blessed to be able to work from home, it's a privilege I know many in this country and around the world have not been blessed with. While I consider myself both and introvert and an extrovert suddenly the lack of people to talk and interact with on any given day was difficult. I also struggled without the consistency of a routine.

By mid-March I had finally nailed a routine down of waking up, working out, and then getting to work. It's the same routine I'm following today and will follow for who knows how long. My boss has been wonderfully supportive in letting me work from home and understanding my risk factors.

But it's not easy. Where we live no one has taken COVID seriously. People don't wear masks and don't respect social distancing. Also, everyone assumes that because I'm young I'm perfectly healthy. You can't see cancer, you can't see lupus, you can't see a plethora of disease but that does not mean they are not real.

There's a few grocery stores here that have special hours for people who are 60+ and for those with compromised immune systems to shop before they open to the public. Every single time I've gone to those shopping hours, mind you most of them are from 6-8 a.m., I've been berated for being selfish and taking advantage of shopping when I can go during their normal hours and someone ALWAYS tries to get me thrown out because I'm young and perfectly healthy. Several times I've almost left my cart and ran out of the store in tears. I flat out refuse to go to the local farmers market anymore because while we were there during their special shopping hours I was approached and yelled at by a woman who called me a slew of nasty names and tried to get me thrown out. 

I'm sorry but who is anyone to judge someone by how they looks? I am far from perfectly healthy. I basically don't have an immune system, my white blood cell count is in the toilet (white blood cells help fight infection), and I have organs that don't work properly. Not to mention it's a weekly struggle to get the medications I need because the Federal Government is testing them in the fight against COVID, thus making me an even higher risk for COVID. Do I need to wear a shirt that says, "I have an autoimmune disease and lack the ability to fight infection. COVID could kill me." 

COVID is not a joke for people with chronic illness. I don't care how you feel about masks or what your thoughts on the matter are. If someone you loved had a chronic illness and you knew that COVID could kill them wouldn't you do everything in your power to keep them healthy? I know I would. I've stopped going to the grocery stores and the only time we leave our home is to pick up a grocery order, to run or walk in our neighborhood, or to take the dogs to the dog park at hours when others are not there. We don't go anywhere else because I'm tired of being yelled at. 

The simple fact of the matter is COVID could kill me. My body does not have the ability to fight any virus let alone COVID. How do you think I feel telling my husband that in the event I do contract COVID please do not let them put me on a ventilator? I know my chances of survival are basically zero so I don't want the fight to drag on for weeks or months. It's gut wrenching but this is my reality. 

I stay home because I want to live. I want to see my husband accomplish all his career goals, I want to see my baby nephew grow up and get married, I want to see my dogs run around like nuts in the yard, I want to purchase a home, I want to hug my parents without fear. There are so many things I want to do but I won't see any of it come to fruition if I get COVID. My doctors have made it very clear that wearing masks saves lives. Put yourself in my place. If you knew getting COVID was a death sentence you'd wear a mask. The CDC has made it clear that if 80% of the population wore masks we could be done with COVID in 2-3 months. I wear a mask because I want to live.

Regardless of how you feel about the matter please try putting yourself in my shoes. Everyone wants life to return to normal ASAP, but it takes all of us working together to make that happen.