My (Very) Long COVID Experience—Hope at Last
Some doctors actually listen.
It’s no surprise to me that I can’t find one solid stock photo for this article that features a doctor having a conversation with a patient. When I put in “listening” as a keyword, there were more photos involving a stethoscope and a patient’s chest than anything resembling human communication.
Even most doctors who like to talk are not known for their listening skills (as I’ve previously noted), but I have to admit an exception when I see one. After I spent the better part of a year avoiding the medical system’s mind-numbing dysfunction and predatory billing, a friend referred me to a special breed of doctor — one with compassion, humility, and active listening skills. Needless to say, I was blown away.
Hence, what follows is a recap of a (rare) positive medical provider experience from a Long Covid sufferer who still lacks any effective treatment. Please put on your masks and strap in for the ride.
The day began like any other — except that I had a doctor’s appointment scheduled for the first time in eight months and was honestly terrified. My anger issues leading up to the appointment fell somewhere on a spectrum between The Incredible Hulk and John McEnroe: The last thing I wanted to do was come away with no diagnosis or treatment and harm my friendship in the process.
I filled out the new patient forms as best as I could and was delighted to be called not long after I finished. I was introduced to my “patient care specialist,” which I’ve never had in my previous provider relationships, and led into an examination room that felt more like the sitting room of a house owned by someone with OCD and an interest in contemporary art and social tolerance (I think there was at least one rainbow flag.) In other words, it was as if I had never left home.
The doctor’s demeanor disarmed me, and I must have spoken about my ailments, confusions, and frustrations for 30 minutes — pausing only to express gratitude for the time and space given and to address any questions, of which there were (understandably) many. She seemed not only concerned about my Long Covid symptoms but also other issues that may or may not have been connected. She was clearly trying to get a holistic picture of the fast-talking, nervous person in front of her, and she listened with no sign of judgment.
She did normal, routine doctor things that aren’t worth mentioning — but what is worth mentioning is that after reviewing my paperwork from previous labs and tests, she recommended another. She wanted to test for an autoimmune issue. I had assumed that my previous PCP had done this more than a year ago or that either the ER or Urgent Care (or both) had done this because they had drawn blood. In fact, I recall that the ER doctor and at least one other provider had speculated that my symptoms could be the result of an autoimmune disorder.
I’m so glad I trusted my new doctor and not the others. Once my results were analyzed. I was determined to be otherwise healthy — but dealing with the highest ANA count she’d ever seen. Finally. Progress at last. After more than two years, I was almost in tears when she called with the news.
I can’t explain how (paradoxically) satisfying and validating it feels to have someone whose job it is to know this sort of thing tell you there’s something physically wrong with you. There were times when I even wanted to believe the illness was all in my head so that I at least could claim some kind of dominion over it — but living in denial is no way to live. I am not the reason I am sick, and I can’t fix it myself.
The next step is a rheumatologist. I can’t say I’m excited. About a month after my PCP appointment, my wife got laid off — so we’re set to lose our health insurance this month. I haven’t had a full-time job since December 2023. The job market continues to shrink, and I wouldn’t be surprised if we’re already in a recession.
I’m also moving out of state as a result, so whatever follow-up sessions I have with the good doctor will have to be conducted via Zoom. This is a setback for sure. The timing stinks — as does the situation in general.
My rheumatologist appointment looms large. It could be the gamechanger I so desperately need. Of course, I won’t fool myself into thinking that all my health issues will be resolved after one appointment with (albeit) the right specialist. Nonetheless, I want to thank the good doctor, Erin E., and her thoughtful, compassionate staff.
There aren’t enough people like you. If I were God, I would create more.
