Take Care of Maya - Who Watches the Doctors?

Phew. This one is heavy. I can't watch the documentary. I can't. But I did read this article which is an excellent overview. 

If you're not familiar with the case, here's a quick summary: Child with rare disease ends up in ER for abdominal pain and the hospital decides they don't like mom's tone. She is accused of Munchausen's by Proxy and child abuse. The rare disease diagnosis is revoked and the family is separated for months...all while the hospital treats the child for the rare disease they insist she doesn't have and bills insurers almost a million dollars. 

They later decide it's not Munchausen's but somehow manage to keep the family apart anyway. The medical and legal system essentially kidnap Maya.

As the system fails and fails and fails everyone (except profits because OBV) in this situation, mom loses hope and commits suicide, seeing that as the only way to break the system's hold on her family. The medical team then view this suicide as verification that mom was nuts (as opposed to tortured) and exchange texts saying as much (doctors are never wrong OBV) as the family is making burial arrangements.

First, I knew mom was high IQ the second they described her primarily by her intensity. Also E. Europeans are more direct which doesn't help, but clearly high IQ. If you're familiar with high IQ, you can see it from space. It's very obvious once you know the pattern. 

High IQ is a type of neurodiversity that gets overlooked a lot and it is NOT an easy thing to deal with because if you don't develop the external markers of authority and credibility to match it, you get what happened to Maya's mom. The world isn't used to auto-didactics and responds poorly to anyone who can learn outside accepted channels.

If you keep reading the article I linked... bingo, Maya is high IQ. Like, high IQ enough to get into the fancy programs out there for gifted kids. The programs that Mark Zuckerberg got into. That's pretty up there even among high IQ folks.

Now, generally high IQ runs in families. So I feel pretty confident in saying we had a smart mom from a culture with a very different interpersonal communication style who couldn't understand why the fuck the hospital was a bunch of nightmare monsters, and when she bluntly tried to get them to course correct, they brutally assaulted her and her child.

But here's the rub, doctors have a hard time believing anyone is as smart or smarter than them. Particularly women. So if you get bossy and use the big words, if you tell them what to do because you know your kid's or your rare disease better than 99% of the people in health care, you will get punished in my experience. 

In American culture, women are not allowed to be smart and competent without credentials or some other source of power.

Even from other women. Women can absolutely be as sexist as men, and when they're working in a sexist and racist framework like medicine, they don't always rise above for a variety of reasons.

You must never look smart. You need to dumb it down. Everything must be their idea, not yours. Especially if you're a woman or a mom. You risk poor care and the case of Maya is a particularly egregious example. 

Although, it sounds like Beatta did work in the medical field, so I'm not clear on how John Hopkins jumped to the conclusions they did about Maya's case. It seems they failed to register mom was officially allowed to know things.

You know, even I was sweating my kid's medical care at times as we tried to figure out what was going on because I know how fucked up the system is and how little power I have. 

I remember well the time years ago when I happened to mention I'd just had pancreatitis to the ped and was subsequently quizzed about how much alcohol I drank to assess whether or not my child was safe at home. One offhand comment and I absolutely triggered a child welfare screening that fortunately, didn't cause any issues. 

(For those who don't know, I have never drank. I have literally never been drunk. The supposed pancreatitis was yet another gift from the tumors medicine failed to diagnosis for years. Oh hey, I found another potential danger of delayed diagnosis...looking like an addict to pediatricians. Thanks, Medicine!) 

We aren't at the same level of risk as Maya's family--we're not going to ERs, we're not dealing with heavy duty pain treatments which helps, but with this latest round of medical wtf I still did my best to tread cautiously. 

In our case, we started with a tainted diagnosis...Lyme disease is ripe for all sorts of negative perceptions. It's considered pretty woo from medicine's point of view, especially if symptoms persist after treatment. Knowing that, I did my best to present well to doctors, was quick to establish we weren't woo, focused on objective, verifiable symptoms, and was careful about what I said overall.

Even despite my caution, we had some occasions where we triggered suspicion. I could see it in their tone, their body language, the way they spoke to me. 

They penalized Maya for seeing 30+ doctors. Well, we have gone through four hospital systems now and multiple second opinions across several specialties. We are up to at least 20+ doctors at this point. We do get quizzed about it at times. We are triggering some side eye. Even though part of the bouncing around is because there are literally zero specialists for what we need in some of the systems. 

They've tried to put us with adult specialists at times and those docs were all 'nope, no kids' which just added more appointments. Just getting care for some things is really difficult and we have no choice but to bounce around. We wouldn't otherwise. 

Rare disease racks up doctor appointments like you wouldn't believe. Rare disease that spans multiple body systems...that's a fucking full time job. It's appointments all day every day more often than you would think. The fact the medical system has formally weaponized the number of appointments and made it canon for Munchausen's tells me medicine doesn't really understand what it takes to get diagnosed with anything let alone rare disease. 

So if you have time, money, and an understanding of science and how medicine works and you know you or your kid have a medical issue that needs to get diagnosed or needs specific care...well, congratulations, the system is designed to label you with Munchausen's or Factitious Disorder. Brilliant!

And here my kid is with a rare disease now too. Fortunately, we're doing okay with the side eye. I'm able to effectively explain things to assuage any concerns. It helps that we're finally unearthing the actual problem and there are a lot of objective markers of an issue and we're not getting into invasive treatments or needing to be hospitalized (which would be a bigger red flag). 

Ha. We even ran away from infusions. We are actively trying to get out of the system whenever possible. I am trying to give my kid a life that doesn't revolve around medicine.

But God forbid we ever end up in the ER or the hospital with me trying to explain her stuff. They might think I'm the problem just like they decided Beatta was.

There but for the grace of God go any of us.

I can't imagine how awful it was to go through what Beatta and her family endured. I am sending them all my love. But I also know, they are far from alone. 

Who watches the doctors???? Who prevents the hospitals from abusing people???? Who reminds doctors rare disease is real???? When will medicine know what patients know????