I’m one of the unknown number of people battling long COVID. We need to do more to understand this life-changing affliction.

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I had my first and only bout of COVID-19 in December 2022. It was an unremarkable case by most standards; I became ill very rapidly, had all the traditional symptoms, and recovered from the infection within two weeks. It took a bit longer to regain my strength but by the end of the month, I felt it had passed out of my system. 

How wrong I was.

I am one of the unknown number of Americans suffering from long COVID. I say unknown because the numbers are a mess. Most counties, including Santa Cruz, don’t track long COVID cases. 

There are estimates, yes. Nationally, anywhere from 7% to 30% of people who are infected by COVID-19 end up with post-COVID conditions, or long COVID. But these estimates are from surveys, and there is no official tally. 

What we do know is that in the U.S., women, people of color, people with preexisting conditions and people between 45 and 65 years old are more likely to experience long COVID. My sense is that there are lots of people with odd symptoms and maladies (up to 200 have been identified) who aren’t even aware these could be tied to their COVID-19 infection. 

The medical profession has called the prevalence of long COVID the next public health disaster, and long COVID clinics have cropped up at many major medical centers including Stanford, Yale, the Cleveland Clinic and others.

Definitions of long COVID are loose, and symptoms are diverse, which makes diagnosis and treatment tricky. Public health outlets describe the hallmarks of long COVID as brain fog, fatigue and breathlessness – ailments that have derailed the professional and personal lives of hundreds of thousands of people. Less public attention has been paid to the many other ways that COVID-19 can take advantage of bodily weaknesses and create catastrophic damage, for instance through chronic pain, which is what has happened to me.

I woke up on New Year’s Day 2023 a month after my COVID-19 infection and my back was hurting, which is not unusual for me, but it was strange that there was no precipitating event. I got onto the floor to stretch and immediately realized that was a mistake. Not only did stretching make my back worse, I was in too much pain to get up.  My husband helped me into a recliner chair with an ice pack and assurances that I must have just thrown my back out.

Days, then weeks went by with no reprieve – my back was getting worse, the pain routinely a 10 on a scale of 1-10. At one point, I was in such agony that I passed out on my bedroom floor trying to get to the bathroom in the middle of the night.

As is often the case with female patients in health care settings, some of my medical practitioners ignored my pleas and denied my pain. 

Thankfully there were also heroes, including the medical staff in my primary care physician’s office at Westside Palo Alto Medical Foundation, who quickly ordered the imaging needed to assess what was happening and, importantly, treated me with kindness. 

When the results came in, my rheumatologist became my strong advocate to diagnose if the spinal inflammation evident on the MRI was infectious or rheumatological. (I will note here that I feel lucky to have already been seeing a rheumatologist; if I had not been, my diagnosis would certainly have been delayed.) After a painful biopsy of my lower spine, pathology results indicated the inflammation was rheumatological.

My back pain was not from a slipped disc or a muscle strain, and it was not from a spinal infection created by COVID-19 (which can happen, by the way). It was from my immune system attacking my own body. 

Three months from the onset of pain and four months post-COVID-19, I got a  diagnosis: ankylosing spondylitis, a somewhat rare degenerative autoimmune spinal disease. 

Autoimmune disease is notoriously difficult to diagnose, even when it does not stem from a COVID-19 infection. Its symptoms are common to many different types of conditions, and the tests used to diagnose autoimmune disease, including markers of inflammation, are not routinely ordered by the physicians who might see you for, in my case, back pain. 

Medical research shows that COVID-19 infections have led to all sorts of new autoimmune diseases in otherwise recovering patients. Among the highest risk are people like me who had existing autoimmune conditions, in my case Hashimoto’s thyroiditis, which is an underactive thyroid. 

I used to be an active person. I did CrossFit for over a decade and routinely hiked 12 miles on a Saturday for fun. But, I did not walk, hike, ride my bike or go to the gym for nearly six months. The pain was unrelenting; I often wore a transcutaneous electrical nerve stimulation, or “TENS unit,” which provides electric stimulation and helps to reduce pain.

I used ice and heat. I took opioids, NSAIDs and muscle relaxants. I have been on three different types of immunosuppressant drugs, which is how autoimmune disease is treated. In the first three months of the disease I hardly went to my office at UC Santa Cruz, where I am a professor. Instead, I took all my meetings on Zoom from my recliner chair. I was lucky to have the quarter off from teaching. 

Now, most days the pain is manageable, but there are still days when it is not. 

When I’m in a flare-up, I cancel everything on my calendar and hunker down at home. I am blessed to have wonderful friends who will bring a tea party to my house or stop by with their baby to distract me. I have a loving family who will do puzzles and make art, watch movies or leave me be. I cry and get angry. I spend time at the ocean.

Sometimes I wonder how my body could betray me to this extent because I have always treated it well. And other times, I marvel at the things it can still accomplish, even in this diminished state. And I know I am lucky – my long COVID has a diagnosis. Many others have symptoms that no one yet understands or knows how to treat.

Sen. Bernie Sanders just introduced a “moonshot” bill to allocate funds for research and education on long COVID. Yes, it’s past time. 

Rebecca London is a  longtime Santa Cruz resident and sociology professor at UC Santa Cruz. She enjoys walking by the ocean, hiking in the redwoods, reading, cooking and spending time with her family and friends.