Ask anyone who has had to navigate the healthcare system in any way, and they’ll tell you it’s a pain in the as*. Now multiply that by about 10,000, and you’ll know what it’s like trying to get treatment for chronic mental illness. While this is a personal account, and everyone’s experience is different, this is hardly a new or unfamiliar tale. If a loved one, or you yourself suffer from mental illness, chances are you’ve got an unfortunately similar story.
Like a lot of people with no money, when I was first diagnosed with mental illness, I went about a decade without care, and when I got desperate enough, I eventually wound up at a county facility. On the plus side, I was able to get in to see someone for $20, while on the other, there were a grand total of two mental health practitioners for hundreds of patients. Upon first meeting with the psychiatrist, he handed me a copy of the Diagnostic and Statistical Manual of Mental Disorders (first edition) and asked me to point at which symptoms fit me. Not only is it patently ridiculous to ask a patient to diagnose themselves, but this edition of the DSM came out in 1952, pre-dating modern psychology.
While the DSM is steeped in controversy no matter the edition, this thing was 60 years out of date and had no place on a psychiatrist’s shelf beyond a historical curiosity. Admittedly, this must have been a 1 in a 1,000,000 case, but given the most recent numbers from the National Alliance on Mental Health (NAMI), which state that 43.8 million US citizens are currently diagnosed with a mental illness, I don’t really like those odds. Don’t get me wrong – I believe in psychiatry and psychopharmacology. But you have to learn to sort the quacks from the real deal. The bipolar I diagnosis he sent me out the door with was rejected by every subsequent mental health practitioner I’ve seen.
After about six months, I realized that the psychiatrist was full of it, but not before rapidly being put on and taken off a dozen different medications. Pro tip: if your doctor doesn’t ask you to properly ween off of things or give drugs the necessary time to actually work, find a new doctor. After I elected to stop my visits, I went another year without any treatment, then found myself with insurance for once and marched right over to the local hospital – where they promptly told me I’d be on a 6 to 9 month waiting list.
Amidst this long wait I wound up moving, switching insurances, and getting into another hospital much easier. That was a breath of fresh air. Only, like a lot of places, you get a limited number of visits before they try to give you the boot. If you need more than a year of help, you’re supposed to then go find another doctor that can treat you over the long term. This includes various types of counseling and therapy, which last time I checked, required a lot of relationship building in order to be effective. One particularly sh*tty therapist destroyed a lot of trust after I emailed her in the middle of the night in crisis mode. I needed advice because I felt like the limited visits (just 8, 20-minute sessions) were actually stressing me out more than if I had just skipped them. That kind of schedule can’t help anyone. Her response was a curt, “I’ve given you numbers for long term providers in the past, here they are again. Also, contact our social worker for help.” Right. Don’t worry about me, I’m just awake at 4 a.m. freaking out into an email.
I had been calling those numbers, and far more, for over a year. Offices either don’t call you back, refuse to treat your particular diagnosis, don’t accept your insurance, or wind up being sketchy, revolving door addiction / mental health puppy mills. Here’s one possible definition of the term “outpatient treatment” for you: show up five days a week to do some Yoga, occasionally speak with a counselor (always different due to high turnover), and try to figure out how to make life work while losing a week or two at a time and then getting billed half to death for it. Addiction is a horrible disease that I’ve thankfully never experienced, but after visiting a few of these facilities, I understood why there’s very little real help in that realm either.
Back to that social worker I was referred to. Turns out they’re way overworked as well. After leaving four or five messages, I got one call back, in which the sympathetic individual said he’d try calling some places for me to see if they’d respond better to him. Never heard from him again. At this point I should have just dialed him repeatedly. That’s what you have to do.
After being bounced after finally exceeding my visit count, I again went without treatment for quite a while before being informed that they technically couldn’t kick me out if I was still symptomatic. So I went back, was forced to transfer to another facility and psychiatrist, wound up with an MD that didn’t specialize in mental health after being told they didn’t have anyone in the area, and then eventually transferred to a place that apparently hadn’t previously existed in their minds – literally the other half of their psychiatry department, which had a bunch of openings. Not to mention, it was right down the street from where I lived, instead of a 40-minute drive away. “WTF” comes to mind. But this is where I’m currently getting treatment, so fingers crossed.
Sadly, this whole story isn’t even the half of it. I could write another 1,000 words on the crap shoot that is psychiatric medication (not that some of it doesn’t work really well, it’s just a process), or about the time I was sent to a specialist for (extremely expensive) advanced diagnostic testing, ultimately having my results tossed out because the person was deemed “incompetent” by the same psychiatrist that sent me to her. The follow-up to that adventure? A referral to an office that turned out to only test for ADHD, which… I don’t have ADHD, or ADHD symptoms. So… your guess is as good as mine on that one. But as you may have inferred: if you’ve got a mental health issue and haven’t been misdiagnosed, you’ve probably fought a battle over diagnostic confusion on some level. That’s because most symptoms between different disorders overlap, comorbidity is common, and again, nobody seems to know what the hell is going on.
Regardless of who are you, you’ve probably noticed increasing talk about how bad the mental healthcare system is. Thankfully, this chorus is getting louder and louder within the greater conversation of healthcare in this country. Yet, the problems we’re facing call for a level of urgency that remains unseen. The common experience of relatively privileged people like me is bad enough, so what do you think it’s like for people without insurance, or access to any kind of facility at all? Mental illness puts people at especially high risk for being unable to provide themselves with the finances or transportation to even access what is available. It’s an impossible situation, and why our streets and prisons are overflowing with those suffering from these conditions. It’s why people give up.