In May 2022, I got sick with COVID and I’ve been managing health issues ever since.

In 2022, it was found that nearly 7% of US adults had experienced long COVID. People’s experience of the condition is diverse, but for me, it has looked like eye issues, daily headaches, poor screen tolerance, physical fatigue, cognitive fatigue, and neurologic issues, including tremors. For many months, my fatigue was so bad I struggled with basic self-care, like bathing and cooking for myself. My walks, if I got out at all, consisted of a five-minute shuffle around the block.

I’ve written about how these physical symptoms emerged at the same time as my first bipolar episode. Given this, it took us a couple years to figure it all out. Did my COVID infection cause the psychosis? Did the psychosis cause the lingering neurologic and cognitive issues? And how were COVID, mind, and body related, given that my physical symptoms got worse during each of my bipolar episodes?

When I had my first episode and entered the hospital, my recent COVID infection triggered a positive test result. In retrospect, I’m grateful for this, because it gave my doctors something to go on to explain the physical symptoms I was having. Without a positive test result, I could be like the many other people out there experiencing mysterious symptoms and chronic illness with no clear diagnosis.

At first, we weren’t convinced my symptoms were long COVID. We would visit many specialists, undergo many tests, and rule out almost everything else before we would accept it as the most likely scenario. We learned a lot about the condition in the process. The speech therapist told us that some people with long COVID experience symptoms of a concussion, which helped explain the headaches, cognitive fatigue, and poor screen tolerance. We also learned about the complex relationship of COVID and mental health. Some people have experienced an episode of psychosis after a COVID infection, others, a dramatic increase in anxiety. There was even a study linking depression in women with an increased risk for long COVID.

As I mentioned in a previous post, it took about 18 months after my first episode to correctly diagnose my bipolar disorder and a few months more to find a medication that relieved both the depression and the mania. As it turns out, this was a big turning point for my physical health as well. Getting my mental health online went a long way towards being able to cope with my physical symptoms. It also helped that around the two-year mark, I saw an improvement in my eyes, tremors, and fatigue. I was able to get out of bed and do more, which in turn helped my mental health.

All these turning points added up to my becoming more functional and regaining some of my independence. But of course, it wasn’t a linear path. As with any chronic illness, how you are doing depends on the day. Some days, my physical energy is high, but so are my headaches, so I have to spend more of the day at rest than I’d like to. Other days, my cognitive fatigue is high, and I have to retreat from the world and most forms of stimulation until the mental blankness passes. Acceptance comes more easily on some days than others.

Experiencing so many ups and downs, you are never assured that an improvement will last, but over time, you learn to meet the day without having too many expectations of where it’ll go. You learn to notice what you’re feeling in your mind and body and respond to it. And you learn to witness it without wishing it were different. (Some days you still wish it were different.)

Mindfulness, acceptance, and mental flexibility are some of the gifts that can come with managing a chronic condition. Sometimes you are just suffering, and that is hard, especially when you have no answers. But over time, you become better at managing the day-to-day and the mindset needed to face an uncertain future. When you don’t know for how long you’ll be suffering, all you really have is how you’re feeling today, what you can and can’t do, and your thoughts and feelings about it. Becoming okay with this takes time.

Two and a half years on, my life still revolves around my long COVID symptoms. I have to rest every two hours to manage my headaches, and I still can’t drive or travel or use screens like I used to. It’s prevented me from going back to work, where I used to find purpose. But, as with many things in life, you can’t always choose what you get, and it’s important what you make of it. Becoming open to the gifts of your illness can make it easier to get through it. And having help and support along the way means everything.

Do you or someone you know suffer from long COVID or other chronic illness? What, if any, are the gifts of your illness? We would love to hear your thoughts below!