In mid-July of 2020, during one of the early Covid-19 spikes, I developed a cluster of covid-like symptoms: shortness of breath with any exertion and even with talking, chest pain when I breathed, extreme fatigue, mild fever, muscle aches, and an occasional dry cough. I got a nasal-swab test; it was negative, but at the time, false negative rates were roughly 20-30 percent. I also got a chest X-ray, which showed my lungs were clear. After a couple of weeks, the fever subsided, but the fatigue lasted at least a month and the shortness of breath lingered for months.
My doctor referred me to a pulmonologist, who was brusque and dismissive of me from the first meeting. She told me that the covid test I’d had -- a gentle swab inside the opening of the nostrils, not the one that goes all the way to your brainpan -- was garbage.
But she also told me that, since I’m fat, it was more likely reflux causing my lung symptoms. And also, because I sometimes have trouble sleeping, I probably also have apnea. (She wasn’t just a pulmonologist, but a sleep doctor).
I tried explaining to her that I have sensory processing disorder, and I wake up at the slightest unusual noise or movement at night, and that’s why I don’t sleep well. “It’s possible that you have … whatever that is,” she said disdainfully, “But apnea is very common in people of your size.” Never mind that we were on a video call and she could only see me from the shoulders up, and had no idea what size my body was.
Unfortunately, I’m accustomed to having interactions like this with doctors. I’m fat, I have fibromyalgia, I’m neurodiverse and I’m well educated on my own health. I do a lot of self-advocacy in the doctor’s office, and some doctors don’t like it. They also don’t always know how to handle it when someone turns up in their office with so many unfamiliar conditions (even though none of them are particularly rare).
I stopped seeing that pulmonologist. My GP put me on a steroid inhaler, which was the first thing to really bring my lungs any relief. After a month of breathing freely, I met with a different pulmonologist, who took my history again. He said right away that my symptoms strongly suggested I’d had a virus that affected my lungs, and that covid was entirely possible. He also said that lasting shortness of breath was common after these kinds of viruses, and that sometimes a miscommunication between the nerves in the throat and the nerves in the chest/lungs can be part of the problem.
I laughed. “No, it really can happen,” he said.
“I believe you,” I said. “I have fibromyalgia -- my nerves misfire pretty often.”
He didn’t question it. At all.
He referred me to UCSF’s voice and swallowing center, where they would check for any signs of a nerve issue. On the day of my visit, the speech-language pathologist talked me through my history. Again, she mentioned the potential for nerve systems misfiring. When I mentioned I have fibromyalgia, she nodded knowingly. “It’s really common for folks with fibromyalgia to have these kinds of issues. We see it all the time.”
My body warmed with relief. It’s rare enough to find healthcare workers willing to take fibromyalgia seriously, let alone ones who are familiar with treating patients like me.
“We also find that this happens in patients who have a lot of sensory sensitivities,” she said.
“That’s me, too!” I said. Of course, I’m not at all surprised -- people with sensory sensitivities are more likely to develop chronic pain conditions, and vice versa. But not that many people in health care seem to be aware of that.
I thanked her for being familiar with these things, and she smiled. And then, when it came time to numb my sinuses and run a scope through my nose and down into my throat, she did two things that really helped: One, she explained everything she was about to do. And two, she got the tiniest scope possible, the one they use for infants, so it would cause me the least discomfort.
I’ve written before about having to craft my own healthcare procedures. It’s exhausting, and shouldn’t be necessary, but it’s also worth it. So it was a huge surprise and relief to be taken care of -- without having to do any of the work myself. Why can’t more medical appointments be this way?
I still don’t know if I had Covid-19. My lungs feel a lot better, and the voice and swallowing center didn’t find anything wrong with the nerves in my throat. And I’m grateful that, at that appointment, I felt genuinely seen.