Submitted by Tamilyn White
Since the very first word about a new virus emerging overseas in late December 2020, I have been hyper alert to medical news and research, first because I find this stuff fascinating and second, because the phrase “a previously unknown virus” alone is terrifying. As our Hayward site manager can attest, I have been vigilant in noting, tracking and evaluating any potential symptoms I have experienced. I was eager to volunteer my arm for the first vaccination series and then again for the booster shot. I masked everywhere I went. I washed my hands many, many times every day. I avoided crowds. I was rabid about social distancing, even with my adult children, even on holidays.
I have been A Healthy Person my entire life and there was no way I was going to change that if there was anything I could do about it.
As it turns out, there wasn’t.
On Monday, January 17, 2022, I went to the office for a day of seeing behavior health clients in my office. I masked, they masked. A day like any other since the start of this pandemic. Early morning on Tuesday, I noticed a bit of a sore throat, sinus congestion and a hint of a headache. Like the dutiful COVID guardian I had become, I contacted the site manager and informed her of yet another batch of potential COVID symptoms. Again, like the times before, she asked that I work from home, seeing clients virtually. Throughout the day, however, the mild symptoms I reported made themselves well known. I took a rapid test at home, following every step carefully. Negative. What a relief to know I just had a nasty cold. I’ve had colds before. Not a big deal.
By the time I went to bed, I was feeling genuinely rotten.
Sometime in the darkness of that night, I woke with the most intense headache I’ve ever experienced. I was in so much pain that I would have gone to the emergency room if I thought I could stand up or walk or tolerate the few minutes it would take to drive to the hospital. By the time it started getting light out, my entire existence was about that headache. “This,” I told myself, “This is COVID.” Although I can’t really remember how it came to be, I was able to get to public health for the full pro-version nasal swabbing and to return home, where I collapsed into bed. I spent the next 36 hours writhing with intense pain in my head and trying to sleep.
Right about the time the coughing and the whole body pains set in, I got an email notifying me that I did, indeed, have COVID. I had a brief moment of surprise – kind of like “Well, what do you know?” as my grandfather used to say whenever anything unexpected happened. This was followed immediately by fear. People were dying from this – healthy people like I thought I was. I knew what to watch for to tell me if and when emergency care would be necessary but I was determined to do everything I could to get healthy fast and to keep my family from getting this.
My next two weeks were spent alone, isolated and quarantined to the bedroom at the far end of the house, leaving only for the bathroom and opening the door only to bring in meals and hydration that my family was leaving for me in the hallway. When I could, I kept up my yoga practice because, even though I hurt everywhere, it felt good to be doing something other than reading, journaling and watching every show of any interest on every streaming service out there. I couldn’t really talk without getting winded so any communication of length was by text. That’s how I learned that my 22 year old son, who was doing an athletic training internship in southern Wisconsin and with whom I’d spend about 45 minutes the weekend before I noticed symptoms, had tested positive during mandatory COVID testing. Now not only was I feeling physically miserable, but also incredibly guilty that I’d unknowingly exposed him to this virus as well.
Fast forward: almost one month later, I was still feeling too sick and showing too many symptoms to return to work. I was losing words mid-sentence. Actually, I wasn’t just unable to recall the words I wanted to say; mid-sentence, I was completely forgetting what I was talking about. The muscles in my arms and legs were so painful and weak sometimes that I stopped being able to trust that they would do what I need them to do.
When I woke to find my entire forehead, face and neck covered in a painful and itchy rash one morning, I couldn’t wait any longer. I needed someone to tell me this was to be expected, that like every other ailment I’ve ever experienced, it too would run its course and leave my body better able to fight off microscopic attacks like it had every time before now. I met with my primary care physician in tears, so frustrated that I – A Healthy Person – was still so sick well beyond when I’d expected to feel better. I am so incredibly grateful for her. She listened and she empathized. Then she told me a horrifying story about her adult daughter who’d contracted COVID in the early days before anyone knew how to treat it or what to expect, who had been unable to work for six months as her body fought off this wicked virus. SIX MONTHS?!? More tears. I could not fathom being sick like this for six months!
My doctor – my wonderful, supportive, understanding doctor – suggested that we start doing blood tests and an MRI to see if there was something else going on that was keeping me so sick. By that point, I was up for anything. If she would have suggested amputation would make me feel better, I probably would have agreed so having blood drawn was easy.
I have spent much of my life eating healthy foods, exercising daily, doing yoga, drinking lots of water, trying to get restful sleep – not to make myself healthy but because doing these things felt good. Being A Healthy Person was secondary but it was part of who I am. I was absolutely NOT expecting anything beyond high white blood cell count that would show that I was, indeed, fighting off a virus. Even so, I checked my electronic records obsessively for days following my first tests. Every time a result came back showing anything but “normal” levels, I was on Google Scholar trying to wade my way through medical journals related to the findings while I waited for official interpretation and tried to keep my fears under control.
At my first follow up appointment, my doctor informed me that previous tests showed a strong autoimmune response. My body was no longer just fighting COVID. It had turned on itself. She suggested more testing to rule out several potential autoimmune disorders and appointments with both a neurologist (for the COVID brain fog) and a rheumatologist to guide diagnosis and treatment of whatever autoimmune process was settling into my life as if it belongs there.
I have since seen both. “Not Multiple Sclerosis” from the neurologist allowed me to exhale some very specific fear. The rheumatologist reviewed results from all of the testing, proposed a handful of potential diagnoses and described the general progression and management of each. She referred me to even more medical specialists for more evaluations, this time to clarify exactly which of my body systems were most specifically under attack and how much each had been damaged thus far. I agreed to meet with her in three months after all the tests were done, all the results were in and all the other specialists had offered their interpretations. Right up until I stood at the scheduling counter in the rheumatology department, I’d been operating with the conviction that eventually my symptoms would all subside and my life would return to what it had been. When the scheduler welcomed me to as a new rheumatology and assured me that, although the doctor prefers to meet in person, we could do virtual appointments when the roads got icy, I had to have her to repeat and clarify. I had, in fact, heard her correctly. I am now A Rheumatology Patient, someone who had a progressive autoimmune disease that warranted monitoring every three months for the indeterminate future.
A month later with all but one of the tests completed, I am still trying to adjust to this new information about myself. It’s tricky, because I don’t yet have a verified diagnosis beyond Long COVID. What I DO have is fatigue that knocks me down when I exert myself and when I don’t. What I DO have are headaches that come out of nowhere, take my full attention, and leave as suddenly as they hit. What I DO have is weird muscle pain and even weirder sporadic weakness. I think a social worker would say I’m a fall risk but I can’t quite incorporate that into my view of myself yet. In this new world, I can’t just pop out of bed every morning at 6:00 ready for the day. I can’t stay awake much past 10pm and I don’t usually make it through a whole night without something hurting or going numb. I lose words often and I have to exert effort to keep my thoughts coherent on some days. Everything takes longer. I don’t like this at all. I know though, that I am at the very beginning of this journey. A year from now, I will likely know what this is and how better to manage the effects of my body’s war against itself. Five years from now, I expect to be nearing personal expert status with this.
I know that I am fortunate. I have my family and they are usually pretty understanding. I am able to work part time and I am adding more to my work days. I have always felt comfortable and safe within the world of medical science. I know how to navigate it even when I don’t feel great. I have a team of people who are experts in their fields. I have a background in pain psychology and in mindfulness practice. I am earning certification in Lifestyle Medicine and while I am completing coursework bit by bit, I’m also learning healthy ways to help myself adjust. I have people I can rely on, people I trust, and people who believe me when I share my experience. As difficult as this journey is, I am so grateful I received the COVID-19 vaccine. Without it, my medical team believes this may have killed me.
Instead, I am A Healthy Person Learning To Live With An Autoimmune Disease.
Tamilyn White is a Behavioral Health Therapist at NorthLakes Community Clinic. She is sharing her perspective on having long-term COVID-19 in hopes of helping others understand the disease.