After almost four years I finally got Covid-19. This was particularly unexpected for someone like me — the person living with obsessive compulsive disorder (OCD), a condition that has dictated strict hygiene practices in my daily life.
I’ve always been the one who won’t drink or eat after others, the person who won’t stick their hand into a bag of chips after someone else does. I need to be the first one to reach for food, or I simply won’t eat from the shared bag.
I am also the person who obsesses over the number of people who might have touched an item at the grocery store. I find myself calculating probabilities, trying to pick the grocery item from the stack that has been handled the least. Boxes, bottles, bags, and more — I’ve sanitized them all. I avoid touching railings, door handles, buttons, or any contaminated surfaces whenever possible. I always keep a bottle of sanitizer in my car.
On top of this, I’ve been diligently wearing masks everywhere — to doctor’s visits, public venues, shops, even during outdoor activities that might bring me withing six feet of strangers or folks I don’t live with. I usually keep an extra mask or two in my bag in case a strap breaks. I wear a mask in the Texas heat. I fight the humidity and the sweat rolling down my upper lip because I know my life may depend upon it.
I have rheumatoid arthritis (RA), fibromyalgia, degenerative arthritis in multiple joints, and my spine to the extent that I’ve lost several inches of height — and I am not even 50 years old. I have the rarer form of Sjogren’s, which in turn caused me to have the rare small fiber polyneuropathy. My RA is aggressive, and my immune system is a beast. I am currently on one biologic and two DMARDs to help control disease activity. This treatment cocktail includes biologics, IVIG infusions, steroids, and narcotic pain medications. Collectively, these elements give me the immune system that resembles that of a cancer patient.
To add to this, being on a respirator was a huge trigger of mine — a very big fear. My senior year of high school, someone I loved ended up in a coma on a respirator for a month and a half. Right when my family was about to choose whether to shut the machine off, she woke up. However, the car accident that led to her coma had caused extensive brain damage, and she never returned to her true self. The trauma and loss interlaced with sickness, respirators, comas, and death have swirled since then like a tornado in my mind, making it nearly impossible to stop and distinguish one piece from another or trace their origin.
So, when I got COVID at the beginning of September I knew I was in trouble. Big trouble.
My COVID Story
Despite all my efforts to social distance, remain clean, work from home, have someone run errands for me, I got COVID.
My roommate had been stuffed up and coughing for a day or two before I got sick. I suggested to him that he might have COVID, but he dismissed it and said it was just a cold. It didn’t seem too bad, although he seemed pretty tired and didn’t want to admit it.
When it started for me, I woke up with bad congestion in my head. I thought it was my allergies, which are so bad that shots won’t even work to help make me immune to my worst allergen nemesis, cedar. I started to feel fatigue, but as a chronic illness patient that is nothing new. None of these symptoms initially raised red flags.
By the second day, despite taking decongestants, my congestion worsened. It was then that I knew it wasn’t allergies and that I was truly sick. Since I had been so careful, I thought I had caught my roommate’s common cold.
The third day was a whole other beast. I was really sick — and nothing was helping the congestion in my head. I was starting to get worried about my oxygen levels. Lying down became impossible; I couldn’t breathe comfortably. My breath grew shallow, and I had to sit up to avoid the mounting panic as it got harder and harder to take deep breaths.
I reached out to my in-home nurse, who has become a great friend through our bi-weekly IVIG sessions spanning two days each. After discussing my symptoms, she suggested I take a COVID test.
I was instructed to wait 15 minutes for the results of my in-home test, but for me, it came back positive within the first five minutes. The test band’s color continued getting darker until the 15 minutes had elapsed.
Since I had never had COVID before, it felt like my body was cycling through all the symptoms I had managed to avoid over the years with each iteration of the virus. It was hard for many people to believe that this was my first time getting COVID. Luckily, my PCP jumped right on it and prescribed Paxlovid, which changed the course of my illness. I began to improve, though it was slow going. Still, I had developed bronchitis, and it tore at my lungs for a couple of weeks, extending my illness to an entire month before it was all over.
As someone who has been clinically diagnosed with OCD, a significant part of my condition has to do with germs and obsessive thoughts. Despite my heightened awareness, fortunate ability to work from home since 2020, my refusal to share drinks or food, even with loved ones, and my dedication to mask-wearing — I still got COVID. And there was nothing I could do to change that.
What I Learned from COVID
So based on my terrible experience, I have a few suggestions. I hope this list serves as a starting point to help you plan what to do and how to prepare for if/when you get COVID.
- Don’t blame yourself for getting sick, as it’s likely that you could not have changed the outcome.
- Prioritize vaccination. Getting vaccinated is very important, especially with multiple viruses like RSV, COVID, and the flu circulating. Don’t wait until it’s too late.
- Have a plan in place. What meds do you need to take? Where do you need to get it? I have a dear friend in Hawaii who can’t get Paxlovid through her PCP but had to go to urgent care while sick with COVID. Knowing this is an important detail.
- Stay organized. Keep a list of your current meds handy.
- Understand when it is time to go to the ER and discuss that threshold with your doctor.
- Consider having an oximeter and blood pressure cuff on hand. My doctor wanted me to keep track of and log my readings between visits.
- Make sure you are up on all your meds. You do not need to be worrying about running out of something that helps your nerves in the middle of having COVID.
- Learn from it. If the experience gives you a wake-up call regarding your living situation, and you can do something about it, then do it. Even if the action might have to be delayed, you’ll get there.
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