Gaslighting and Poverty: Two Great Tastes That Go Great Together
If you're going to get sick, just make sure you're rich first.
Note: I am currently dealing with sudden sensorineuronal hearing loss, triggered by a virus. My experience with this is what prompted this essay.
I have a type of immune deficiency called a selective subclass deficiency, which is slightly more subtle than some other immune deficiencies, and I want to talk about just how hard it was to get diagnosed with it when I was *not* in the rarefied and expensive land of high-quality doctors that you see in places like the Bay Area.
In 2016 I got a bad and also atypical case of shingles. Then too I also had sudden hearing loss and my recovery was very slow. I missed a month of work, I felt poorly for the rest of the fall and winter, and my ears were hypersensitive to sound for months. Finally I seemed on the mend, but then I had two relapses within the year.
By this point I was already used to things going wrong in my body and having doctors shrug, so I’d kind of internalized a bit of an attitude of learning to endure the unendurable, and thinking, “oh well, I guess this is my life now.”
But even with all that history of gaslighting, I could tell something was not normal. So I tried to get treatment.
I honestly figured it out myself. I thought, I must have an immune disorder. This is actually the hard part of diagnosis! Often people don’t figure out they have an immune disorder until they’re at death’s door.
However, my insight didn’t help me in the slightest. I asked my PCP in Boise for a referral to an immunologist, and she said, “There aren’t any immunologists here. But even if there were, you have to have an immune problem to see an immunologist.” I was like, But how can I find out if I have an immune problem, without seeing an immunologist? She was however unmoved.
Now, reading this you might think, Wow that’s bizarre circular logic your doctor gave you, she’s wrong, obviously you just picked yourself up and found a better doctor. But let me tell you — this was not my first crazymaking comment from a medical professional. It was more like my 200th.
My entire life has been one gaslighting episode after another, because most doctors would far rather tell a patient she’s crazy than say the three little words they hate: “I don’t know.”
So you go in with joint pain and then you leave with a sample for Cymbalta.
These experiences wear you down. It’s hard to always feel like you’re fighting against the current. Eventually, at least to some extent, in spite of all evidence and logic to the contrary, you will at least partially internalize the idea that the reason you can’t seem to make any traction in your life is because you’re lazy and crazy, rather than because you’re (say) extremely ill.
Anyhoo. I tried one more time. I got a different PCP and told my story to her. Reluctantly, and with more than a little condescension, she ordered *one* basic immune panel, which came back normal. See? No need to go to an immunologist. I was defeated.
It was 2 years later that I finally made it to the Center for Complex Diseases. It is a very expensive clinic based in the Bay Area, and they treat weird stuff like chronic fatigue, post-Lyme issues, and other difficult illnesses. There, they ran more complete tests, and these showed that while my total immunoglobulin was normal, my IgG1 and IgG3 subclasses were low. This means (as I understand it) that I may be able to fight off Disease A just fine, but Disease B will knock me for a loop — it just depends what types of tiny fighters are needed for each type of immune attack.
And this, my friends, is the strange and subtle difference between wealth and poverty, or rather just wealth and not-wealth. That subtle difference is the luxury of the correct mindset that a proper diagnosis can give you.
If you have a hard-to-diagnose illness, and you’re not rich, then the doctors will invariably diagnose you with “Lazy and Crazy.” Especially if you’re a woman. I can’t even imagine how much exponentially worse it must be, if you are also a woman of color.1
After a few years of this, either you internalize what they’re saying, or you waste time in therapy treating depression that’s a symptom of the physical illness (not the other way around), or you lose hope that you’ll ever find help and stop trying . . . or all of the above. The inevitable result is that, at least to some extent, you end up so defeated after hitting so many brick walls that it strips you of a sense of agency, and pushes you into a feeling of futility and learned helplessness.
Now, rich people can get sick too. They can even get sick with super shitty stuff that’s incurable (although less often, since chronic stress is one of the biggest triggers for all this shit). But if their first stop is UCSF, then maybe they get to a place like the Center for Complex Diseases after only a year or two . . . instead of decades. And then after that relatively short journey, they know what the heck is wrong with them!
That means they can articulate it to themselves and to others. It means they can engage in proper treatments and preventions. And it means, most of all, that they don’t think of themselves as “crazy.”
Now, does that fix their life? No, incurable diseases are still incurable! It won’t mean that shitty things won’t happen. It won’t mean that a husband won’t leave because he “didn’t sign up for this” or that family won’t made snide comments about how “you just need to get out more,” or that they won’t suffer heartache when they have to give up their careers, their hobbies, or their former dreams for their life. Being super sick sucks no matter what!
But even if the illness itself strips them of agency, the process of trying to get treatment does not. Their doctors are partners in health rather than adversaries and hurdles. And while just being ill can — all by itself — cause you to feel depressed, hopeless, or full of self-recrimination, at least it’s a private battle. Your healthcare journey doesn’t make it worse; your doctors treat the illness as the problem that you both tackle together.
They don’t treat you as the problem.
It’s a profound difference.
If you have a proper diagnosis and support, you can look at your life at least to some extent with abstraction. You can view your symptoms clinically and without judgment. You can get away from the self-loathing internal monologues. It’s not that you’re cursed, it’s not that God hates you, you don’t suck in some special and unusual way — you’re just . . . sick, and you’re feeling the way sick people tend to feel. And that situation is hard, but (crucially) it is not hard because of You.
If you’re not-rich, and you have a “zebra” illness,2 then you have none of the comfort of science, facts, guidance or validation. You not only feel like shit all the time, and suffer alone, but then you are also made to feel like shit about the fact that you feel like shit. And since you’re not as “productive” as you “should” be — and in capitalism, that’s a cardinal sin right there — you’re made to feel like you’re a bad person, a person with low moral fiber, a failure.
So this is the difference that wealthy people have. It’s not luxury fabrics or luxury vehicles, but a “luxury” mindset, the luxury to live in a science-based reality. The luxury to understand the root cause of your struggles and, in doing so, gain compassion for yourself.
Meanwhile the “poverty” mindset is really just the reaction to what’s being placed on you — it’s the fog of gaslighting and internalized self-loathing that comes from total abdication of care, that makes everything seem futile and hopeless.
It is a very subtle and yet also very profound advantage of wealth and excellent healthcare access.
Besides being white, another advantage I had during all this was that I was bright and articulate. Even so I was regularly dismissed. Even worse, being knowledgeable about medicine is often a double-edged sword that makes doctors angry at you and less likely to help you. A bitter story that has become infamous in my family is the time my white, well-educated father went in for emergency care.
“Well Sir, what seems to be the problem?”
“I think I’m having a stroke.”
“Oh really,” replied the doctor, “And what medical school did you graduate from?”
He really was having a stroke. He had to get diagnosed by an eye doctor after the urgent care doctor blew him off.
This is medicine.
Or even a regular illness, because doctors miss regular stuff All The Time!