My two years as a long COVID patient

Researchers who study long COVID have estimated that approximately 30 percent of people infected with the virus have long-haul symptoms. I’m one of those people. I recently passed the two-year mark of when I first got infected. That’s over twenty-four months of feeling physically sick, mentally stressed, and emotionally discouraged.

Odds are that you or someone you know is living with long COVID. I hope that my story is in some way helpful.

Living with symptoms

In February 2020, I was sitting on the floor sorting through a stack of papers. A moment later, I was flat on my back with the room spinning and my body in a cold sweat. I got myself to bed where I slept, ached, and sweated my way through the next 48 hours, making my way out of bed to drink juice and let the dogs out (and in and out and in.) I’d never before experienced such debilitating fatigue, brain fog, and body aches. It took a few days, but I started to feel well enough to teach yoga classes and resume activities. Sort of. I was managing around the continuing symptoms, assuming I was recovering from a nasty flu and would be better in a few days.

I saw my doctor for a check-up. He ran a blood panel, all of which came back within normal range. So, he named my symptoms as viral and told me to rest, drink fluids, etc. He didn’t at that time know that it was THE virus.

One month later, as the fatigue, fog and aches continued, the words “coronavirus” and “pandemic” started showing up in the news. COVID tests weren’t available yet but my symptoms matched what the CDC was publishing. My symptoms lessened and then spiked again. Finally, testing became more widely available. On April 28, 2020, I had a nasal swab that felt like it was poking all the way up into my brain. The test results came back as negative, as would many other tests over the next two years.

If the test was negative, what was wrong with me? I was frustrated and afraid.

Looking for answers

After a string of appointments with my primary care physician, he referred me to one of his colleagues. Over the next few months, I was referred to two other doctors and finally an infectious disease specialist who was part of the University of Minnesota team under epidemiologist Michael Osterholm. This doc put me under a battery of tests ranging from blood panels to CT scans to EKGs, all of which came back within normal range. I remember sitting in the blood lab hoping that they would find something wrong with me, treat it, and I’d be back to my old self. Instead, my primary called me the “healthiest sick person” he’d ever seen and his voice cracked when he told me that he didn’t know how to help me.

After dozens of appointments through 2020 and 2021, there were still no answers. The doctors agreed that I’d had COVID, despite what the tests said. And they agreed that they didn’t know what to do for me. The virus was still mutating, research was still new, and what is now known as “long COVID” wasn’t yet recognized.

For months, the symptoms put unexpected and unwelcome limits on my life. Keeping up with work and life at home had to be coordinated around when I would need to rest. And, by rest, I mean napping for two to three hours a day. I had trouble focusing on a book, writing, or even watching a movie. My physical strength came in bursts. I missed out on two summers of riding my bike and going for long walks.

One-by-one the things I loved became more difficult and my mood plummeted. The people who love me held me up as much as they were able, but they were also living in a pandemic and had limited energy. Long COVID, like other chronic illnesses, is incredibly tough on family and friends. Life felt really hard, but we were all managing as well as we could.

Dealing with reinfection

Although I was almost irrationally diligent about keeping distance and wearing masks, was vaccinated and boosted, COVID found me again. I tested positive in January 2022 presumably with the omicron variant. This was the first time in two years that I tested positive. I was less sick this time around, but shortness of breath and vertigo joined my other ongoing symptoms.

I spoke to my primary about my new symptoms. Still unsure of how to help me, he referred me to a website that he’d recently found, Survivor Corps calls itself the “largest grassroots movement in America dedicated to actively ending this pandemic.” The organization has quickly evolved into one of the most robust COVID-19 data sets and research tools in the world. They provide education and support to those affected by COVID – patients, but also family members, friends, and colleagues.

My doctor’s referral was to a page listing Survivor Corps Post-COVID Care Clinics in my area. I found one within my insurance network and have an appointment within a few days of me writing this post. Based on my medical journey up to now, I’m fairly cynical that the clinic will know how to help me.

I’m working very hard to move toward cautious optimism. But, I’ve heard “we don’t know” so many times and have been sick for so long, it’s hard for me to feel encouraged. Because COVID has changed me as a person and I’m really not a fan of many of those changes.

Grappling with a new identity

I’ve become the person who people ask “How are you feeling?” before anything else. That’s completely fair since long COVID takes up a lot of space in my life. Some days I don’t feel like I have much else to talk about. I can’t make plans without a caveat that I might change my mind depending on my energy level. I’ve cut back on work hours. Overall, I’ve become a new person – one who lives with limitations and a redefinition of the identity that had become so familiar.

What hasn’t changed is that I am a creative problem solver and tenacious self-advocate. I also have the privilege of decent health insurance and access to two major COVID research centers. I’m doing my best to read the latest research, treat my symptoms, and take opportunities that come my way.

One thing I’m excited about is that I’ve recently started seeing clients again on a more regular basis. For those who need it, I look forward to sharing what I’ve learned in a yoga therapy-specific training program for working with long COVID patients. The training was led by my certification body, the International. Association for Yoga Therapists and I’m using the techniques for myself as well as with clients. 

Advice and resources

Here are a few things I’ve learned along the way. Most are easier said than done, but give them a try anyway.

  1. Be gentle with yourself. You’re healing and it’s probably taking a lot longer than you want it to. But, beating yourself up over the things you can’t do isn’t helpful. It just makes you feel worse and you don’t need that.
  2. Talk to friends or a trained professional about how you’re feeling. They won’t be able to cure you but they will be able to help you feel less alone. If needed, advocate for yourself by telling them that you just want them to listen and you’re not looking for advice. (Unless, of course, you are looking for advice. Personally, I’m weary of hearing all of the ways people think I can fix my situation.)
  3. Find new ways to enjoy yourself. I start every morning with a crossword. It’s something I liked to do pre-COVID and I can still do now. On days that my brain feels like pea soup, I choose the easy puzzle. On days that I’m more clear, I venture to the mediums. Rarely do I tackle the difficult category, which is where I used to go. I’m learning to be OK with that.
  4. Rest when you need to. This isn’t the time to power through, not that your body will let you do that. When long COVID fatigue shows up, our bodies feel like they’re shutting down. Make your rest times feel good. I curl up in a favorite blankie and often binge on Netflix as an escape. I don’t always remember what I’ve watched – again, brain fog.
  5. Find a way to manage the well-meaning people in your life who start conversations by asking you how you’re feeling. My go-to is “I’m managing,” and then move to another topic. Because I get tired of talking about my symptoms and seeing the 45-degree head tilt.
  6. Look for resources. The two I’ve found the most helpful so far:
    Coronavirus Anxiety Workbook – helpful for anyone still reeling from the past few years. The virus is winding down somewhat but there’s ample ongoing anxiety and depression for many of us.
    SurvivorCorps – good research and resources like the post-COVID clinic lists I mentioned above.
  7. Most of all, don’t give up. Long COVID its part of you but it doesn’t have to define you.

“Having compassion starts and ends with having compassion
for all those unwanted parts of ourselves.” – Pema Chödrön