Long COVID and Me: A True Story
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I am very happy to see us featuring long COVID again after our initial foray in Healio Rheumatology in February. Joining me in this discussion are several astute colleagues including Aranka Ballering, MSc, Andrew J. Laster, MD, and Jeffrey A. Sparks, MD, MMSc, who provide insightful comments and have raised many of the unanswered questions surrounding this disorder.
This topic is of extreme importance to society in general, to rheumatology as a profession and, as I will now share with you, to me personally, for I have been wrestling with long COVID since my breakthrough infection in July of 2021, which I described in this column more than a year ago.
One of the perks of being chief medical editor is that I can decide to revisit a topic if I wish and that is what I have decided to do for this month’s issue. I will briefly share with you my story and how it has fueled my passion to contribute to this field.
Ironically, just as I failed to self-diagnose my acute COVID-19 breakthrough by attributing it to just a bad cold, I was also in denial regarding my long COVID diagnosis. I was fortunate to have recovered from the delta variant with only a couple of weeks of a severe upper respiratory infection, accompanied by anosmia and acute fatigue, which improved significantly over about 1 month. Easy right? In reality, it was anything but easy, for after about another 6 to 8 weeks I began noticing several other symptoms, which at the time left me uncertain as to what was going on.
First and most obvious was tachycardia. I felt it mostly at night and chalked it up to anxiety about life issues. This is now considered a classic sequela of COVID-19. This persisted for a couple months but I was able to exercise and felt reassured.
Then, insidiously, I began to notice a change in my neurocognition. I would not describe it as just forgetfulness, as it was much more than that. It came on subtly and slowly, escalated from 2 months post-acute infection to crescendo at about months 6 to 8. Although I do not like the phrase and have found it somewhat pejorative, I now robustly endorse the term “brain fog,” which hung like a cloud particularly impairing my capacity to multitask.
My usual and frequent lectures, multiple papers in various stages of editing, and hundreds of daily email and text messages began to overwhelm me like never before. I changed my style of managing my time and projects, and leaned on coworkers and my admin to help keep up, but was still challenged. Of greatest concern were the times I would look at a reminder note I had written to myself and fail to recognize it or its meaning. I was frightened.
My excuses and attributions to stress began to feel hollow, and I knew I needed help. Talking to family, trusted colleagues and leaders in the field began to calm my anxiety and relieved my sense of denial. Fortunately, as part of its natural history, my lifestyle changes, or the many non-evidenced-based therapies I have tried, it has been subsiding ever since and my “brain fog” is now about 80% better.
The last year has been anything but easy. I want to emphasize that although I am grateful for the improvements I have experienced, the frustration and anger that I and many long Covid patients experienced is real and deserves to be acknowledged. In an effort to channel this energy into something more positive, I am now part of the long COVID cohort at my institution and, as most of you who read my editorials know, I am more passionate than ever about contributing to this field. Cassie and I have just published a comment in The Lancet Rheumatology expressing our current assessment of what rheumatologists may have to offer the long COVID field.
Although I am better in many ways, I am not back to normal yet consider myself extremely fortunate in comparison to the many patients I see with neurocognitive complaints, from conditions ranging from fibromyalgia, lupus, myalgic encephalomyelitis/chronic fatigue syndrome and of course long COVID. In the absence of any approved therapies, I have found that what has helped me the most have been the interactions with individuals who have demonstrated warmth and understanding.
I am both privileged and humbled to be again writing about my personal journey and hope that by sharing my story I am able, in some small way, to help advance understanding into this frustrating and complicated condition. Please share your thoughts with me at calabrl@ccf.org or at rheumatology@healio.com.
References:
- Calabrese LH. “The evolving role of the rheumatologist in long COVID.” Healio Rheumatology, February 2022, page 10.
- Calabrese LH. “Notes from the field: My personal delta COVID-19 breakthrough infection.” Healio Rheumatology, September 2021, page 8.
- Calabrese LH, Calabrese CM. Lancet Rheumatol. 2022;doi:10.1016/S2665-9913(22)00266-1.
For more information:
Leonard H. Calabrese, DO, is the Chief Medical Editor, Healio Rheumatology, and Professor of Medicine, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, and RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic.
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