The mental health effects of living with long COVID

I go to the beach at Hermosa Beach every week and breathe in the fresh air. Most weeks I get there and the sun is setting, the sky is an orange-purple-pink cremesicle color and the clouds are fluffy. The predictability of this place calms me: the salty air, the sound of crashing waves, the pounding of runners, the chirping of seagulls and the wind dancing on the sand. My visits allow me to have a clear chart for the week and reflect on the progress I’ve made mentally and physically.

About 2½ years ago I started showing symptoms of COVID-19. But unlike my friends and family who have recovered from the infection, some of my symptoms have persisted. It would take dozens of doctor visits and medical appointments to confirm that I have long had COVID.

I’m a data journalist at the Los Angeles Times and I love spreadsheets, so my inclination has been to track my symptoms.

My planner became a living document where I describe the good days and the bad with color coded dots to indicate how I’m feeling. I used to take an even more comprehensive approach and chart every time I felt short of breath, my blood pressure dropped, or I lost my voice. The reality is that taking notes to take to doctor’s appointments was helpful, but collecting data every day for a year was wearing me out.

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I wanted to believe that my meticulous data-keeping would lead to answers from my doctors, that precious “aha” moment that every person living with a rare disease craves. But in the late summer of 2021, I was feeling completely overwhelmed by test results, research I’ve stumbled upon in my long COVID support group, and the fact that no doctor has a perfect solution for dealing with my symptoms.

There were days when I had to make phone calls to get the earliest possible appointment, conduct interviews, make the odd doctor’s appointment and analyze data, and manage my everyday life. The doctors kept saying, “We don’t know anything yet,” and “Let’s try this new drug, but we’ll have to watch you for two to three months.” That, on top of the news I covered every day, gave me that Feeling of wading deeper and deeper into the dark ocean.

My doctors told me if I didn’t take a break, my body would take one for me. So I took a step back from work and said yes to taking care of myself. I am very fortunate to have an employer, family and friends to support me and the financial means to go on vacation. Calm is vital post COVID, but unfortunately the systems in this country do not support well the mental health or physical health needs of the people who need it most. My vacation allowed me to focus on my health and just my health instead of trying to juggle five things at once.

I realized that as much as I enjoy collecting data, it was time to ditch the chart of my personal symptoms, change my focus and energy, and just be kinder to myself.

I swapped my spreadsheet for an Apple Watch and spent more time outside, focusing on the progress I could make from walking—a little longer and more challenging each day. It cleared my head to think about what I really enjoy doing. I started painting while I was on vacation to explore my creative side, as I haven’t written much. Initially it provided an escape on my worst days, but over the past few months it has evolved into much more.

Painting allows me to express myself in ways that reporting, writing and data analysis do not. It’s the only area of ​​my life where I don’t have a deadline, a color palette to stick to, or a set routine to follow. Often my images are the cotton candy clouds I see on the beach at 7pm. In a space of uncertainty, painting sunsets gives me a sense of normality and calm. Those moments make me leave my body for just a minute and focus on the wet paint and bright pink tones and bring me back to sitting on the sand and watching the horizon and the ocean blend together.

Painting also allows me to find the balance and resilience to continue helping others. Along with switching my personal data tracking, I’ve also switched from tracking daily coronavirus cases to longer interviews with other long COVID patients. I can empathize with a whole range of younger people like me who are having to learn to live with a chronic illness much earlier than they imagined. While I enjoy doing the interviews, some of them remind me of my early days trying to get the care I needed and leave me wanting to do something more to help those people. On those days, painting gives me a place to let go of the medical trauma that people share with me and move on.

And even though my symptoms are diminishing, I still pace myself and take my time painting, even when I’m not at my worst. There’s nothing quite like peeling the plastic off a new canvas, squirting a small dab of acrylic paint onto my palette and running the brush over it to capture another sunset. The mental health effects of living with long COVID

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