Would You Rather Hindsight Edition

Note: Loopy doopy as fuck right now. Spew quality may be poor.

Today's burning question...

Would you rather have a serious but concrete medical problem like a heart attack OR be diagnosed with a laundry list of conditions that, until recently--for physicians who keep up--were considered signs of a psychiatric problem? And no, healthy isn't an option.

Guess where the teen lands?

Not that she was ever given a choice.

On the one hand, she is receiving some of the best medical care I have ever seen in my life. Did you know that sometimes pediatricians coordinate? Like, the specialists talk to each other and it's NORMAL. It's a fucking STANDARD. It's like kids get 24/7/365 tumor board type case discussion. It's wild.

I'm speechless. I had no idea. We've never been this deep in with pediatric specialists. Just one off appointments.

So the functional woo but board certified PCP ped (who honestly is fucking brilliant even if I'm not so sure about the Chinese herbs, but you can SEE the intellect there), the infectious disease specialist, the cardiologist, the rheumatologist, the PTs (although note, that part isn't going as well as it could, but still, there's a loop and they are in it)...they are all talking.

We had multiple same day appointments and the one ped had already messaged the other ped and they had read it already before they walked into the room. It was like the most functional game of telephone in the history of the universe.

This thing where I have a colonoscopy with an electrolyte disrupting tumor  or surgery with cranky asthma and no one knows what to do and just barrels on anyway and if you have problems, oh, well sucks for you...it wouldn't happen if I was twelve. There would be a discussion and a care plan. 

They really throw adults to the wolves. By design.

The one specialist thinks long covid might bring this ped style coordination to adult medicine. I guess they're finding they have to integrate and coordinate across specialties to deal with long haul. Siloing patient symptoms and treatments as if they don't touch in the same body isn't working so well anymore.

So anyway, the specialists have been able to zero in on several diagnoses now that would get her a psych diagnosis from pretty much any doctor as an adult. Primarily triggered by Lyme (with a dash of covid) and then the way all that impacts her pre-existing joint issues. Fortunately, the science is starting to catch up so she should be treated better than previous generations of patients and maybe even see more effective treatments at some point.

The plan is to try a medication for one thing as lifestyle changes weren't enough. 

Plus finally buying knee braces. We had some intense yes-no-yes-no back and forth between two warring physical therapists on braces, so we took it to the specialists for the tie breaker. She does appear to meet the criteria for a connective tissue disorder.

I cringe as I type that as I'm hyperaware of all the eye rolling that goes on among anonymous care providers on the internet around diagnoses like Lyme and Connective Tissue Disorders (of which Ehlers Danlos Syndrome is one). 

All I can say is that we're at a top hospital system with physicians who've kept up with the very latest science (and I imagine are probably generating some of it). 

And as someone who has tracked medical science across several decades now and has seen some things... 

I think in ten years (maybe less) the care providers making fun of patients and stigmatizing them because of these diagnoses are going to have a lot of egg on their faces and more than a few regrets. And there will have to be some type of restorative justice or reconciliation for all the patients the stigma was allowed to harm. Especially as so many will still be around to know exactly how much they got fucked by science.

I mean, I doubt any reconciliation will happen, because medicine's biggest blind spot is always that they think they know everything coupled with the belief that doing better excuses the past. But that doesn't mean amends won't be owed, just that they will never be made.

I don't know. Maybe don't cope with the stress of your job by making fun of anyone with any diagnosis, even if you're anonymous...

If you're feeling brave, come eyeroll your disdain in my face and see what happens...

Okay. Okay. Are there problematic patients with these diagnoses? Yes. Absolutely. I deal with them in patient groups. But stop defining a whole diagnosis and people you don't know only by the most extreme, most unhinged patients you've met. Some of whom are so young, they don't even have a fully developed prefrontal cortex. Please tell me we're not being assholes to a 30 something patient because some kid somewhere is acting out and has gone viral on social media.

Well, I mean, of course we are doing exactly that. Because that is actually a thing that would happen.

Look, just because there are unhinged people with a diagnosis doesn't mean anything when it comes to the science or the ethics of care or the standards of human decency. And while some of the science is still emerging and far from standard, if you just read the most recent studies, if you just look at the science, you can clearly tell at some point there's going to be a breakthrough. The future has post Lyme syndrome and probably more EDS than anyone wants, including the patients themselves.

It's coming, and if I were a care provider, I'd be asking myself who do I want to be on these issues in hindsight? Do I want to look back and see I was making fun of people, or dismissing them with anti-anxiety pills, or do I want to be the person who could see the emerging pattern and who ensured I was ready to implement what patients are going to need, what they deserve?

My kid wanted to be healthy but she's not going to get that. Some people don't get a choice of what they see in hindsight...

(And yes, I posted earlier about the teen quitting the medical hamster wheel. That's coming. We're going to tie up some loose ends and hopefully pull back after that. It's not sustainable even if we wanted to keep going. The teen had five medical appointments this week. That's 15+ hours with travel time. Then there's me and my medical shit...that's another ten hours. It's just insane. We can't do this forever. Who knows with me, but the teen has a shot at reclaiming her time so that's what we're aiming for. The shot just won't land for a while.)