My finding psychiatric care saga or how hard it is to “get help” even with immense social privilege

This is traumatic to write about because it’s tied up emotionally with what happened next, which is me getting hospitalized in a psych ward, which I don’t wish on my worst enemies. I can’t write about that, not yet. So this saga will end in a bit abruptly till I can get out the rest of the story in small bursts without bursting into tears just thinking about it.

Also this won’t be the best written post because I need to just get this out & also the day I’m writing this on is soaked in ableism so I’m doing this for a bit of catharsis & I tend to write feverishly & without editing when that happens.

So here goes..

If you’ve read my past posts, you’ve seen me post about mental illness as a kid. But fast forward to about a decade ago in my late 20s & a bunch of crappy things happened to kickstart my severe contamination OCD symptoms after almost 2 decades of being mostly manageable other subtypes of OCD. I’d had some psychiatric care in college & grad school but nothing long term & didn’t really know how to navigate the system in the US.

So it’s April 2012 & my parents are visiting me & I have an OCD meltdown which IME is much worse to experience as an adult than as a kid & my mom accompanies me to see my PCP at an “integrative” medicine clinic & we describe what happened. Dr. S gives me a prescription for a short term anxiety med & asks me to see a psychiatrist. I mention the date at the beginning of this paragraph because this will shortly become very important as will the fact that my PCP is located at a clinic.

Now at this point in my life I’ve actually seen a fair number of specialists because of other health issues with usually not great experiences. But I’ve not actually had trouble making appointments with doctors who are in network with my insurance. So I’m wholly unprepared for what happens next.

A pause here for a quick rant on how medical professionals love to blame all the ills of the medical system on insurance but almost never look at their own role in making patients lives miserable.

Ok back to my story. So at the time I had an engineering job that paid ok & likely more than many peers my age especially since we’d graduated into the recession. I had decent health insurance which covered psych treatment no problem & had many doctors in network. I had a graduate degree & a physician parent to help me figure out health stuff. Even things that are barriers for some of my peers were going well for me. There’s a common issue in South Asian communities of not considering mental illnesses as medical issues that need treatment & Alhamdolillah my family has never had that issue & is very supportive of psychiatric treatment. In short, I had many things going in my favour: insurance, $$, supportive family. I even lived in one of the cities that has got to have the densest population of hospitals in the US if not the world: Cambridge/Boston.

So with all these privileges in my court, I started looking for a psychiatrist to see. My general strategy for finding new doctors at the time was to look at ratings a local magazine published about best area doctors. Many of these were at top hospitals in the country & took my insurance. So I started making calls.

First up IIRC was Mount Auburn Hospital which the clinic my PCP was at was sort of affiliated with in terms of sending patients for specialist care. I made an appointment for an intake & then the day of the intake I arrived & found that unlike other specialties at this hospital, psych was housed in an old dingy building where I could physically not enter because of my contamination OCD about my allergies. So I turned around & went home. Now remember this is 2012 so telehealth didn’t exist. I didn’t panic though because so many other great hospitals near me right? Right?

As I searched for care around Boston, it quickly became clear that this was going to be much harder than I thought. I spent the next few weeks contacting every major hospital’s psych department while also losing my mind. The rejections I got fell into a few categories.

The biggest one was: we can’t accept you as a patient because your PCP is not at the same hospital. You’d have to switch PCPs. There’s a 4 month wait to see a new PCP & then you’d be able to ask for a psychiatry appointment. This is the reason I remember getting from MGH which had a dedicated outpatient OCD program that’s supposed to be one of the best in the world. Sadly I’ll never know because I could never be a patient there because I wasn’t prepared to renounce my PCP whose clinic I’d got to after a lot of searching for a medical practice with a systems mindset. Note that I had other doctors at MGH because none of the other departments imposed this absurd rule. & lest you think that this has anything to do with effective care coordination which may be considered very important in psych, my later experience shows it’s actually worse in psych because of how the medical system silos psych issue information from other health information even within your own care team due to entrenched sanism.

Another really “fun” reason I got was “you’re too sick for us to help you. You need an intensive program. Oh the intensive program? That has a 7 month waitlist. We’ll call you when a spot is available. What’re you supposed to do in the meantime? Idk have you tried switching your PCP to another hospital?”

I mentioned earlier that many hospitals took my insurance. It also turns out that many highly recommended doctors did not take my insurance or any insurance. Which seems to be a disproportionate issue in psychiatry compared to other specialties. My fave was ofc when a clinic would say “we can’t take you as a patient because your PCP is not at this hospital but Dr. So & So sees patients at his private practice too & we can give you that info. No he doesn’t take insurance there so you’d have to pay out of pocket”. Now I was paid decently but not enough to afford hundreds of dollars per appointment esp when I had perfectly good insurance coverage available.

The most common one was simply that they weren’t taking new patients. That’s the reason I got from the local community health clinic which didn’t have the best reputation mainly because too much demand, not enough staff but because it’s community health, they were supposed to be more available than other options & had culturally sensitive psych health programs too. Here’s where the date I mentioned earlier becomes important. It turns out one of the worst times to try to find a new doctor, especially with the arcane rules psych departments have about who they’ll accept as a patient, is the end of semester timeframe. Because that’s when their residents are graduating & there’s a gap where new residents join & have to be brought up to speed.

In the end, someone from community health advised me that the fastest way for me to access care would be to go to ER where they’d do an assessment & then they’d *have to* discharge me with follow up care.

So it was that just before the July 4th weekend that year, I naively packed a bag & walked to Cambridge Hospital’s dedicated psych ER which was just a few blocks from my apartment. I’ll have to write about what happened during my stay another time because it was one of the first times I was severely traumatized by the medical system apart from garden variety medical gaslighting I’d experienced previously.

I did end up getting discharged with follow up set up with a [v overworked] psychiatrist at the local community health clinic & many other bad things happened but that’s for another day. I’ve had to repeat the process a few times since too due to bad doctors, moves & more. I wish I could distill my experiences down to “tips on how to find a good psychiatrist” but tbh a lot of it is just luck & beating your head against a wall till you find something that works & like you’re screwed if you don’t have spoons or support to deal with this process.

The moral of this story is that when people talk about access to healthcare for mental illness, it mainly focuses on insurance issues. Which don’t get me wrong, they suck extremely much. But there’s little to no public discussion, especially among non-disabled allies, about how hard it is to actually access psych care even if you have all the privileges going for you. Fighting for insurance access is important & it won’t solve all the issues with people actually being able to get appointments.

I’m planning another blog post later about the topic of “accountability” when ppl speak about unsavoury symptoms of someone’s mental illness impacting other people. & it’s often framed as “person x is responsible for getting help for their issues” which presumes that help is: available, accessible & effective. None of these things is guaranteed to be true. This post focused a little on the available & accessible parts of the issue & other posts will focus on other parts. But it pisses me off when ppl get told it’s their fault for “not getting help” if they have insurance as if the help is there to be got.

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