And some tips for patients navigating a broken, feckless system that calls you crazy
I caught Covid at the doctor’s office this summer, the only time I left the house in 7 weeks. It was just me and the medical assistant in the lobby, while I received an injection. She infected me, unless it snuck into the medicine. I considered myself lucky that the virus barely touched my lungs at first.
For a few weeks, I had high fevers, flu-like symptoms, and fatigue like I didn’t know was possible. I thought I knew fatigue. I did not! I was sleeping all day. I am not a day sleeper (ask anyone). I was unable to not sleep. I strongly believe that there were times when I was so fatigued that I wouldn’t have been able to escape a fire. I was sort of in and out of consciousness, with hallucinations and serious brain fog. I let so many pots burn because I forgot. But none of this was that terrible. It just lasted so long.
Then, I seemed to get better, then worse again, then actually better. After about eight weeks, I was no longer conking out or running a fever. I started walking again. I didn’t see the harm in pushing myself. Then, suddenly, mid-walk one day, a fever took over and my lungs tightened.
I relapsed, and it was worse. The fever was even higher. My lungs were now affected. The relapses happened a few more times, until I learned that any kind of stress, exertion, exposure to cold, not eating, or exposure to people who might have co-infections (cold, flu), even masked, could trigger relapse all over again. In the middle of the recovery, I had to look for housing, which set me back a lot.
I still consider myself lucky, because I have been able to rest and, over time, greatly recover. My immunity is still precious, in a 19th century swooning couch type of way. I still cough like a sailor. But I’m not running frequent fevers.
My journey, I learned, is typical for long-haul Covid. The virus causes serious issues for months or over a year in about 10 to 33% of cases (based on a variety of studies). The symptoms often come in waves and can recur worse than the original bout. Long-haul needs to be part of the conversation for how workplaces manage Covid, if such a conversation even exists.
A lot of Covid patients end up with chronic fatigue syndrome (CFS), otherwise known as myalgic encephalomyelitis (ME), another one of the complex chronic illnesses that are not well understood by Western medicine. ME causes post-exertion malaise (PEM), which can happen when you don’t see it coming.
ME used to be chocked up to mental illness or poor lifestyle choices or “being a woman, so essentially unreliable and whiny,” as the American Medical Association once probably described us. But eventually there were too many people (white men) suffering, so the establishment gave it a name. They did not invest in much research to figure out what causes it, but they named it.
One cause of ME, we now know, is a virus.
Not all Covid patients have or only have CFS/ME. Other Covid patients have serious damage to their hearts, lungs, and other systems that can take months or forever to heal. I learned this from post-Covid patient support communities on Facebook before I saw it written about in the news.
Personally, I haven’t let doctors dictate my long-haul recovery for a couple of reasons, though I was diagnosed too late for early interventions to matter. First, I saw so many long-haul Covid patients disappointed by doctors gaslighting them. Their newly raised heart rate or breathing issue was being diagnosed as anxiety, by doctors that are not trained or qualified to diagnose mental health.
It seems like every doctor becomes a mental health expert when they want to dismiss a patient’s concerns, but they draw a hard line around talking about other parts of the body outside of their specialties.
“I’m sorry I only work on the area around the throat, not two inches below. But have you considered that you are crazy?”
I also have been down this road a lot in my life. I have a few complex chronic health issues. I know where Western medicine is useful and where it makes things worse, physically and emotionally. I didn’t have the stamina for another endless frustrating quest in the world of doctors for a brand new condition.
But then I hit a wall. I was still having fevers. After five months, I saw an immunologist. He took blood and ruled out a handful of illnesses. “Sorry, I can’t help,” he said.
“You have actually nothing to say at all?” I asked. “I have had a fever and infection most days for five months. No insights? You’re the immunity guy? Nothing you might suggest about how to handle the fever, how not to handle it, what to eat, how to strengthen my immune system? Do you want to explain what a fever is? I paid for an hour.”
“I’m sorry. We call what you have ‘Fever of Unknown Origin.’,” he said. “I cannot conclude it is the result of an infection. Good luck.”
Well thanks for the name! At least that doctor didn’t call me crazy. My blood work did show a newly elevated thyroid marker. So I saw an endocrinologist, to be distinguished from the immunologist and rheumatologist that looked at other blood markers.
“The thyroid is probably not causing your fever,” the endocrinologist said. I looked up hypothyroidism during the appointment. Fever was a possible symptom. “Oh,” she said. “I don’t think so.”
“Good talk,” I said and left. That was not surprising to me at all. I have had rare effects to medications before, and multiple doctors have told me it couldn’t be caused by the medications, even though the side effects were listed.
“Have you considered that you are crazy?” they would ask.
“I have, but I think it is more likely this new drug, considering that I didn’t have this symptom before taking it, which is listed as a possible side effect on the manufacturer’s website.”
“I don’t think so,” they would say. So I’ve been dealing with this illogical gaslighting for awhile.
(Not all doctors. I do love a few doctors, but I have seen dozens. The ones I love wouldn’t be offended by this. They are with me.)
I’m recovering from Covid pretty well outside of the doctors’ wasting my time. I consult with patients and other types of practitioners and read a lot. I take supplements and OTC meds like Pepcid and baby Aspirin that are associated with Covid recovery. (Pepcid stabilizes mast cells; aspirin prevents clots.) I try things. I was told gluten and dairy could trigger my immune shutdowns. I have found that to be true with even small amounts of dairy, but not so much with wheat. That is just me. I’m doing okay! I have been relatively lucky or moderately unlucky.
Covid is laying bare all of our terrible health systems. Most doctors are not trained to treat the whole body, and Covid doesn’t just happen in one part. The profession breeds arrogance in the face of ignorance. A case in point: thousands have suffered chronic lyme disease issues, while some medical “experts” wrote articles suggesting that it was a mental illness. Now we have Covid, another infection, causing similar symptoms, lending credence to the idea that infections can damage essential body systems and organs, even if they don’t kill you. Why was this even controversial?
In any case, I wrote this because I’ve been seeing more and more patients in my Covid support communities complain that doctors are dismissing their symptoms as mental health issues, despite almost every mainstream news outlet publishing on the seriousness of long-haul Covid. That has been quite a telling dichotomy: many doctors are behind even the not-great mainstream media.
There is also a lot of gaslighting around long-haul on social media. Many people that are pushing agendas around re-opening schools and businesses reject long-haul as real. For them, Covid is either relatively harmless or it kills a small percentage of frail people.
The logic here is wild: If Covid can kill some people, wouldn’t organ damage make sense as a step before death?
I saw so many patients complaining about being called mentally ill that I shared in a Facebook post some tips. I didn’t want people to have to go through what I went through nearly a decade ago. It took me 7 years to get a diagnosis, and the process was horrible. I was worried that I might sound didactic or preaching, but I got a very positive response and a couple of requests to share. So I’m printing it here, revised a bit.
Survival tips for managing the medical establishment with long-haul Covid 19:
- Do not give away that you are psychologically affected to medical doctors. You should mask your emotional distress. I’m so sorry it has to be this way. There are studies indicating how medical bias against mental health issues affects care. If you can, present yourself as clinical and specific, upbeat but sick. Make it clear that this is all new, and you want to know why. This doesn’t mean you should mask it from the people in your life or therapists, and if you are in severe mental distress, that might need to be triaged first. But if you open the door to the anxiety and depression you are probably feeling (because 2020 + Covid) with medical doctors, you are more likely to get gaslit. If they tell you that the tests don’t show anything, say something like “Oh that is good to rule things out.” I have seen skeptical, arrogant doctors do a 180 with me after saying things like that. Most doctors don’t like it when people complain, which is atrocious and monstrous of them. Doctors are also biased to tell people they are fine, because they really do see a lot worse.
- Shop around. Doctors who jump to mental illness are a waste of your time. I even tell them. I say, “I know that people in your field often suggest mental illness when you reach the limits of your understanding. Thank you. I will be seeking advice elsewhere. I’m sorry that you have a limited knowledge here. But you aren’t trained to evaluate my mental health.” I point to historical examples of modern diseases that were dismissed as psychological. I believe in shaming unhelpful, rude, or dismissive doctors. I will walk out mid-appointment, with a strong, cutting exit line, like, “I see you aren’t as familiar with the topic as I had hoped.” I exit before I let them try to get in another superiority flex. This also helps me emotionally recover from the gaslighting. It’s fun! (I try to get my blood tests and RXs first.)
- Women doctors tend to be a bit better, especially for women, in terms of trusting your experience and acknowledging what they don’t know. Women of color doctors even more. That is my experience but a generalization. I’ve seen many disappointing women doctors too. It also depends on the field. Age can play a role too. I have my own personal preferences, like dating. But if you’ve only been seeing, say, white male middle-aged doctors in hospital systems and keep getting the same unhappy results, maybe diversify!
- Western medicine does not understand the body as a collective system. Your average immunologists, rheumotologists, endocrinologists, etc. study specific markers, diagnose specific diseases, prescribe drugs, and that’s it. They do not understand each other’s fields well. Covid is a systemic inflammatory response. Your doctors may not have even kept up with the knowledge in their own fields. I find strength in integrative medicine (which is often covered by insurance) and Traditional Chinese Medicine (TCM). TCM actually has anti-virals that are proven to work. If you just google search “Does xx help fight a virus?” you may see that U.S. studies are “inconclusive.” Look at the studies done in China though, on Google scholar. I’m not saying our studies here are funded by special interests who are financially motivated to keeping patients needing manufactured prescriptions, but I am also not not saying that. Note: I have never been called mentally ill by a Chinese medicine doctor, and none has made me worse.
- It isn’t all the fault of doctors. It helps as a patient to know what your goal is for each appointment and to express it. Are you looking for a diagnosis for a new syndrome? It’s very hard to get well-diagnosed period in Western medicine, but at least that is a fair goal. You can bring a list of possible conditions and demand the tests. Ask for the tests they don’t know about too. Study your own blood work. Or, are you just looking for relief from a particular symptom, knowing that the cause is Covid? Maybe you just want to have a conversation about what is happening.
- You are the customer, and doctors are the service. I know I inherited a lot of fucked-up authority issues around doctors, but we actually have the power. Definitely share with other customers on Yelp and other review sites about your experience to prevent the rest of us from going through it. (I bad-Yelped a doctor, and he threatened to sue me. He didn’t have a case, but the threat indicates how much power we have.)
- If your funds are limited and you can’t shop around, I suggest becoming your own clinical doctor as much as possible. Use doctors for the things you can’t do yourself—tests and RXs. A LOT of doctors will say “Don’t trust the internet for information,” but that is because they are scared to not be gatekeeping anymore and they believe patients are children. That warning made some sense about twenty years ago, when WebMD told everyone they had cancer, but now there is an explosion of hard data and personal accounts on the “internet.”
- You can pay enough attention to other patients to make yourself smarter than the doctors about Covid. When you start teaching doctors, they either realize that they have to work with you differently or get offended and arrogant/reactive. The first type can be a good partner. It is ANNOYING to spend money teaching doctors, but a partner is a better model than an authority.
- At the same time, your body is not like anyone else’s. We can’t all eat the same diet, even if we have the same illness. And Covid has made eating tougher for people. People newly dealing with chronic illness are often new to really listening to their bodies. They aren’t always sure how food and medicine is affecting them. (I wasn’t always sure.) Working on that skill is the most important thing you can do, in my own experience. I believe in taking a “guinea pig” approach to my own body. Sometimes the thing I try makes me worse. I’m looking for information, not a fast cure. I used to be looking for a fast cure, years ago, and that made me sicker.
- I know diagnosis feels like a big deal, and it can be important, but it doesn’t necessarily define you; and non-diagnosis doesn’t invalidate you. A lot of diagnoses are just descriptions of collections of symptoms and don’t have cures. Some are more serious underlying diseases, clearly defined. Some are mysteriously related (like POTS and EDS, one a heart condition, common in Covid, and one a genetic joint condition). This is probably obvious enough. I just think it’s important to consider diagnosis as description not the thing itself. Even cancer is not always as clear cut as it has been understood. Also, not every new condition is permanent or will always be this bad. Most people recovered from SARS 1 within two years. That’s a long road, but it’s not forever and it is probably marked by steady improvements.
- I don’t want to dismiss anyone’s symptoms—and definitely get checked out—but Covid causes mass inflammation in the body. And there is evidence to suggest it continues to live in the body after it is no longer contagious. That affects all of our systems. A lot of what many people report—hair loss, muscle and nerve pain, enlarged organs, brain fog, headaches, swollen glands and tonsils, rashes, etc—are the result of your body in general distress, working hard. PEM happens because you’ve pushed a body that you don’t realize is already overworked. Other issues can emerge from being bedridden for months, which may be necessary, like muscle pain. Some things just need time to improve.
- If you’ve become truly disabled by Covid, unable to work or take care of yourself as before, it can be empowering to connect with disabled activists and groups. You don’t have to be in a wheelchair, have a famously known disease, or even be officially diagnosed yet. Post-covid syndrome is enough. Also, accepting that you are disabled doesn’t mean that you will be forever, if that is your big fear. But maybe you will be, which doesn’t have to feel like a death sentence or shameful. About a quarter of our population is disabled. It happens to almost everyone at some point. I have found reading about the “social model of disability” very helpful and understanding disability in the context of capitalism. Disability literature and communities can help you managing losing work, relationship changes, stigma, and the rest of the what happens socially when you become sick.
I have long wanted Western medicine to fall apart and rebuild around patient-centered care. That is a model in which we have the tools to diagnose and treat ourselves and each other, in which our health isn’t managed by gatekeepers with such limited frames of knowledge. Covid is definitely presenting an opportunity to change things up. What long-haul Covid keeps proving is that patients know more than doctors about a lot of things.
I’m not hopeful for the future of care. I know from studying the criminal justice system that wealthy institutions respond to backlash by reinforcing their power. I can already see how our for-profit healthcare system may use Covid to reassert its authority and control over how we heal. About the institutions of care, I am extremely pessimistic. About patients already helping each other, I have a lot of hope.