Long Covid is still here. I know – my life came to a stop because of it
3mon 29d ago by sh.itjust.works/u/AcidiclyBasicGlitch in chronicillness from www.theguardian.com
“How much of [long Covid] has actually disappeared due to recovery?” Osterholm asks. “How much of it has disappeared because people just stopped talking about it, tried to move on with their lives? And then how many don’t even recognize what they have? How many people are living a compromised life, but they don’t recognize why?”
This, Osterholm says, is one of the biggest challenges of long Covid: keeping people informed, especially during a time of rampant fearmongering, misinformation and politicization of the human body.
“In some ways, [the difficulty in diagnosing long Covid is] also about the concept of mental health,” he continues. “Because long-term chronic compromise leaves one to begin to wonder: how much of this is in my head?”
And when resources are stripped back from studying a disease, instead of layered on, it reinforces the idea that the disease is mild enough to be ignored, making it even more likely that people will doubt what their body is telling them.
Where Osterholm observes the state of long Covid from a bird’s eye view, Dr Lisa Sanders, medical director of Yale’s long Covid multidisciplinary care center, spends her time one-on-one with patients.
The good news, she says, is that even if individuals are still struggling to recognize their long Covid symptoms, the medical field isn’t.
These days, it doesn’t typically take long before doctors and their patients are able to start the trial-and-error process of treating symptoms. It’s hard work, often requiring multiple specialists, because long Covid often affects multiple bodily systems. It’s potentially years-long work, which is why it’s so important to start as early as possible. Because for some patients, long Covid doesn’t resolve – it hardens.
"There is a serious degree of deconditioning that comes with long Covid,” Sanders says. For some patients, “Covid comes in, whacks you, and you’re left with ME/CFS,” a debilitating variation of chronic fatigue syndrome. Other patients are left with postural orthostatic tachycardia syndrome (POTS), a condition in which your heart rate accelerates when you stand, often leading to a loss of consciousness. Others develop orthostatic hypotension, in which your resting blood pressure falls frighteningly low. Some, like me, are left with a mix of all of the above.
“So a lot of times, the patients I see are reasonably deconditioned because they have learned that when they exert themselves, they feel bad,” Sanders says.
Unfortunately, being less active further increases a person’s limitations, which can in turn exacerbate symptoms, trapping them in a cycle of physical decline.
So what do long Covid patients do?
“My advice to them is to partner with your body and figure out how you can integrate some level of activity into your daily life so that your heart and your lungs do not deteriorate,” Sanders says. She emphasizes that some level is often a very low level, otherwise patients risk pushing into post-exertional malaise, an extreme exacerbation of fatigue symptoms that can last for up to a week.
The good news, she says, is that even if individuals are still struggling to recognize their long Covid symptoms, the medical field isn’t.
These days, it doesn’t typically take long before doctors and their patients are able to start the trial-and-error process of treating symptoms. It’s hard work, often requiring multiple specialists, because long Covid often affects multiple bodily systems.
I wish this was the case everywhere, but it's definitely not. Not even everywhere in the United States. I'm in Louisiana (and I get it, it's Louisiana, but still) and I've literally been told by multiple doctors who previously had specific long COVID clinics in their practice that without funding to continue the clinics they're no longer even able to treat patients for "long COVID."
I've had to go out of network just to find specialists willing to give me a diagnosis and treatment instead of just saying "there's no real protocol for that."
This sentence in particular hit pretty hard:
And when resources are stripped back from studying a disease, instead of layered on, it reinforces the idea that the disease is mild enough to be ignored, making it even more likely that people will doubt what their body is telling them.
I literally spent the better part of the past year convincing myself that my shortness of breath was probably anxiety only to get confirmation that my pulmonary function test from August actually did in fact show that I have what qualifies as adult onset asthma.
It's not just patients doubting themselves, it's doctors, it's employers, and coworkers and really all of society doubling down on gaslighting. I have been walking around the past year with adult onset asthma and a primary immune deficiency, begging for help. I kept getting sick over and over again but was treated like a hypochondriac by just about everyone I saw before I finally just went out of network. The last visit before deciding to do that, I was offered cognitive behavioral therapy and PT bc we had apparently already tried everything else (by not actually trying anything), and when I said I wasn't interested in pursuing that right now (you know on account of the whole literally not being able to move or focus on anything) it was documented in my chart that I refused treatment...
In the meantime, without a diagnosis, I didn't even have any explanation to offer my job other than "it's probably long COVID but nobody really treats that anymore (at least in Louisiana)."
I finally received a Primary Immunodeficiency diagnosis (which as I'm finding out there's actually tons of research regarding immune dysregulation following COVID, and successful use of immunodeficiency treatments in long COVID patients. I'm finally supposed to be starting infusions soon, but it blows my mind to think about how long it took me to get even the beginnings of an answer, and acknowledgement that I really shouldn't just keep ignoring everything my body has been telling me for the last year and pushing myself until I literally no longer could.
When my body felt like it just stopped working, it wasn't me being lazy or feeling "blah." It was a never ending cycle of immune dysregulation and chronic inflammation that has been putting me at increased risk for even more health issues down the line while being told over and over it was nothing too concerning.
really glad you're starting infusions! I might have to look into that
Definitely worth looking into. There are some risks to treatment, so it's not for everyone, but if you're immunoglobulin deficient it seems like probably the only real chance at recovery short of just riding it out indefinitely.
Apparently the link between immunoglobulin deficiency and COVID severity has been known for a long time. https://pmc.ncbi.nlm.nih.gov/articles/PMC8057306/
Even fully vaccinated and boosted there's a chance that you won't be fully protected if you're already deficient in the first place, and may need to have your antibodies monitored along with a tailored vaccine procedure to ensure you're adequately protected.
It seems like that's something that more people should really be aware of. I would have been much more careful about exposure had I known I was at a higher risk.
https://pmc.ncbi.nlm.nih.gov/articles/PMC9203263/
https://pmc.ncbi.nlm.nih.gov/articles/PMC12808491/
https://www.sciencedirect.com/science/article/pii/S1201971225002140
Long COVID is now more prevalent than asthma in school aged children. The US botched its COVID response so badly that we basically continue to sacrifice our kids and their future well-being to it while pretending it's not a thing.