As the weeks drag on during this wild pandemic that our world is facing I’ve been chasing a way to put into words my experiences and feelings as someone with a chronic illness. It feels like none can effectively describe the turmoil and uncertainty nearly every person in the world is feeling right now.
When we were told to social distance, I got it. I hated it just as much as my healthy friends and family but I’m assuming because I’ve been dealing with health-related concerns almost half my life I understood what we were supposed to be doing.
The first weekend this whole crisis became real in the United States, I was so angry to see people I knew going on hikes with friends and meeting people at the beach. It was so frustrating to spend my time explaining to my friends and family the seriousness of this pandemic but they didn’t seem to listen. It was hurtful to be told I was being paranoid or dramatic when in reality I was just paying close attention to any facts I could find on this virus as soon as they came out.
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When the stay at home order in California was put in place, my roommate and I decided we were not going to let people inside our home until this crisis was over. This decision was made because I’m an immunocompromised person and have other various risk factors. But on week two of the stay at home order, I made a mistake and invited my roommate and her friend inside after seeing them sit together outside much less than six feet apart. It was getting cold outside and I was feeling super lonely and just didn’t care that I was in close proximity to someone I shouldn’t be at that very moment. As we sat in my living room playing a board, game my roommate’s friend asked me “So does this mean I can come over all the time now?” I realized the mistake I made and admitted to them that although I was lonely and was having a great time with them, we weren’t making a good decision and it couldn’t happen again.
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That night while getting ready for bed, I finally grasped the thing I had been reaching for since this crisis started. It wasn’t that I was the only person who understood what safe social distancing was. It wasn’t that other people didn’t have to worry as much as I did about getting sick and that my health was more fragile than theirs. Yes, those were things I had been thinking a lot about, but it wasn’t the thing that made my situation unique from the healthy people in my life.
I realized that just because there is a global pandemic and everyone is doing the same thing, it didn’t mean that I was. My health problems never go away and have actually gotten more complicated thanks to my appointments and treatments getting canceled. I still have to keep up with my medication regimen and have actually been to the pharmacy more frequently and been prescribed more medications to replace the medical treatments I’ve missed. Instead of a three-month supply of my hydrocloroquine, I get a 14-day supply.
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My trigeminal neuralgia and migraines have gone haywire after all of my April magnesium infusions were canceled. My allergist tried to get me set up with home health and they didn’t call him back for three weeks. In the first few weeks, grocery shopping was impossible and twice as expensive thanks to stores being out of the gluten-free options I count on. And because I’m on Social Security Disability, I didn’t have the option of stockpiling food like others.
COVID-19 or not, I’m still sick and have the same needs I always have, if not more, and despite my efforts, my illness hasn’t gone away or gotten better in 15 years. I’m still a professional patient. That work never ends for me.
I accepted the place God has me in a long time ago and I still accept it now. But I do see that it makes my challenges during this crisis that much harder and that much more work. I know how important it is for me to stay well and stay home right now. Throughout my day, I think of all the doctors and nurses who have given so much to me over the years. For our first responders, I’m willing to wear a mask in the grocery, sanitize my hands in between errands and am trying really hard to remember not to touch my face and to wash my hands when I get home.
I’m happy to say that on May 1 I did get my magnesium infusion, and yesterday my Neurologist came in just to give me Botox when so many of my friends are having to go without it.
It’s week nine of staying at home and I can’t say I’ve gotten much done besides “Netflix and chill” — and it hasn’t been very chill, either. But I am happy to say I’m still alive and haven’t gotten COVID yet. I’ve stopped feeling angry about decisions I see other people make and instead am trying to focus on making good decisions for myself.
When this is over, I hope people will be a little bit kinder to one another and a whole lot more understanding of each other’s challenges and beautiful differences. I don’t think I’ll hear “it must be so nice not have to work” from anyone I meet for a very long time now that nearly everyone has also experienced being at home all day every day. That alone would be an awesome change to see. I know that when events and gatherings are allowed to happen, I won’t be choosing to isolate like I did in the past.
I hope this journey has given you as much clarity it has me and that you have found the words you’ve been reaching for. After all, we’re all in this together.
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