On the Difficulty of Accessing Mental Health Care

 

I’ve seen therapists off and on for the past twenty years, nearly always feeling disappointed, nearly always feeling like they didn’t quite get what I was trying to tell them, always irritated when they’d ask, “How are you feeling?” meaning “How are you feeling emotionally?” If anything, I felt angry, but my anger didn’t seem to register for them, even when I told them, “I feel angry.” They seemed intent upon converting the anger into sadness. It seemed like they were all trying to get me to cry, and I resented them for it and refused to cry, no matter what.

I’ve been on and off of medication for the past twenty years as well, always anti-depressants, always prescribed by general practitioners (family practice or internists) without any diagnostic questioning, frequently without even telling me what diagnosis they’d put in my record. They let me name the medication, and they’d prescribe it for me. When I worked in the pharmaceutical industry, doctors always complained about direct-to-consumer advertising and patients coming in requesting medications by name, and here I was invited to do it over and over again.

Over the past five years, I started seeing a pattern of highs and lows that started having an increasingly greater impact on my life and on my family. I went to my new internist and told her I was struggling. She asked no questions, essentially let me diagnose myself, and, once again, told me she’d prescribe any anti-depressant I wanted, but I was done with diagnosing myself and playing eenie-meenie-miney-moe with psychoactive medications. I wanted some more guidance than that. I wanted something to, finally, work. I summoned my courage and asked her to refer me to a psychiatrist. She said, sorry, she didn’t know any.

I was aghast. My primary care physician working within a major university healthcare system didn’t know any psychiatrists to whom she could refer me?

So, I did my own research, calling practices that had both psychologists and psychiatrists. “Do you think you need a psychiatrist?” they would ask, and I couldn’t figure out why the hell they were asking me that. How do I know if I need a psychiatrist? I just know I need something more than a general practitioner letting me choose my own adventure.

After a particularly bad and disturbing mood swing, I decided it was time to let a psychiatrist decide if I needed a psychiatrist.

Despite the memes that pop up in my social media newsfeed around the winter holidays exhorting people to not be afraid to seek help if they are having an emotionally difficult time, the seeking turned out to be easier than the finding.

I searched my insurance provider’s find-a-doctor database and called every psychiatrist in private practice within twenty miles. A lot of the information was out of date. Fully half of the psychiatrists I called had moved out of the area or were not taking new patients for some other reason.

I ended up leaving appointment-request messages with three active practices. Encouraged by the advice on the NAMI website, I left a new voice mail with each practice every two to three days, reminding them of my name and phone number and requesting an appointment. After two weeks, I began to wonder if it was even worth it to try to see someone. The only thing more depressing than being depressed, it turns out, is being depressed and asking for help and getting only silence.

Eventually, I got a reply. The first available appointment was with a psychiatric nurse four months out. Four months. I took a deep breath and put myself on their schedule. A week later, I heard from the other two practices and got an appointment with each. One was for two weeks later with another psychiatric nurse, who I learned at my appointment didn’t know the difference between an affective disorder and a mood disorder. The other was for a month later with an actual psychiatrist, who finally, finally asked me questions before diagnosing me, seemed to know what he was talking about, and gave me the shock of the bipolar type II diagnosis. Three months after I first asked my internist for a referral, I finally had a psychiatrist and started mood stabilizers.

The medication is generic and actually surprisingly inexpensive, but the psychiatrist bill gave me a bit of sticker shock, even with my health insurance. I knew mental health care in the United States sucked, but this was even worse than I’d realized. I’m upper middle class and live in a major metropolitan area. What about people who live in more rural areas or who don’t have upper middle class family incomes? What about those who can’t take off during the day for appointments? What about people who might lose their jobs if their employers find out they’re receiving psychiatric treatment? You’re not supposed to be fired for mental illness, but of course it happens, they just don’t say it’s because of the diagnosis. And if you’re in an income bracket that’s unlikely to sue, it’s even easier to get away with.

The suicide rate is rising in the United States. Of course we need to change the stigma against mental illness so people won’t be afraid to seek help. But what happens when people seek help and don’t get an answer? What happens if that person can’t wait three months for treatment?

It’s like working up the courage to jump from a burning building, to trust that the net is there to catch you, only to look down as your feet leave the ledge to see that there is no net.

There’s hospitalization, but that takes a person out of work and away from their family and leaves them with enormous medical bills to pay and perhaps without a job since their absence was certainly noticed while they were in the hospital. And there’s little to no follow-up care or access to therapists knowledgeable about serious mental illness (of the half-dozen therapists I’ve seen in five different states, none was able to identify my mood swings as a bipolar disorder. My internist didn’t even know what bipolar II was when I told her my diagnosis. She was also unfamiliar with my medication, neither of which inspire confidence). How are people who’ve been hospitalized supposed to readjust to life outside the hospital, to keep up with medications and make lifestyle changes and learn what they need to do to take care of themselves while dealing with a serious mental illness?

Receiving a bipolar diagnosis and adjusting to medication has been really, really difficult, even with a psychiatrist who responds to my calls and e-mails and family who are supportive and knowledgable (or at least willing to become knowledgable). Even with great support, those with serious mental illness still hear every time there’s a shooting (which is nauseatingly frequent) how mentally ill people are dangerous and violent, even though the percentage of people with mental illness who commit violent crimes is roughly the same as the percentage of adults in the U.S. who have serious mental illness: about 3-5%. (About 20% of adults in the United States have some kind of mental illness.) Even with great support, every time we see a new doctor or tell another friend or apply for a new job, there’s the chance that we’re going to come up against antiquated, inaccurate, dangerously biased opinions about mental illness. Even if we can work past these, it’s exhausting to deal with over and over. And I’ve only been doing it for a few months.

It’s great to say, “Don’t be afraid to ask for help.” But the help—real help—needs to be there when we ask.

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