Whenever I do a public speaking gig, I dread the question. I know it’s coming; it always does. Whether I’m speaking to students or consumer groups, someone inevitably asks, “What can you do to help someone who refuses to get treatment?”
It’s the question that makes me feel most helpless. It hurts to hear students ask it about their friends, but it really hurts when parents ask it about their children. They’re usually crying, and they’ve been walking this road so long you can see it in their posture. They look hunched, exhausted, pale. They would do anything to bring back the children they’ve lost, at least temporarily, to mental illness. Sometimes their children are literally lost – they’ve cut themselves off from their families, run away from home, or stayed missing for days at a time, often bingeing on drugs and alcohol. They refuse to stay in treatment or keep taking meds.
And all I can do for these parents in the moment is hand them the old saw that there’s nothing you can do to help someone who doesn’t want help. I tell them it's okay to refuse to interact with someone, even your own child, until they choose to accept help. Then I direct them, feeling defeated, to the already-overworked counselors in attendance.
It hurts like hell to want something good for someone who doesn’t want it for herself. I know, because I watched my mother cry and my parents argue about me for many, many years. My BPD and eating disorder tore my family apart. My parents never knew when they’d get the next call from my husband or my friends saying I’d attempted suicide. They never knew when the person calling would finally say I’d succeeded.
All they saw was that treatment wasn’t working, because it wasn’t. I was misdiagnosed as bipolar for many years, some of which I spent in Arkansas, where treatment was sorely lacking. Even after I moved to Ohio for grad school, I saw an endless string of treatment providers in community and university mental health clinics. I’d develop a rapport with a therapist, but eventually end up getting mad about something and dropping out of treatment. Even my semi-successful therapeutic relationships had an expiration date, because I was seeing residents or grad students. We’d work together for a few months, sometimes a year, and they’d move on to the next placement. I’d feel abandoned, let myself run out of meds, and end up back in the emergency room of a public hospital, where staff were often overtly hostile to people who attempted suicide.
Inadequate resources are a large part of the reason people don’t get well. It’s exhausting, embarrassing, and ultimately defeating to keep running the gamut of clinicians who don’t have time to help. It’s not the clinicians’ fault; they’re doing the best they can in a terribly overloaded, understaffed system. In response to my last Being Patient post, a commenter named Brian wrote, "I'm at a crossroads with road blocks along the way and despite the apparent cries for help, nobody is there to listen."
A few months ago, I was lucky enough to attend a luncheon honoring Marsha Linehan, the creator of dialectical behavior therapy, at the New York Academy of Medicine. Afterward, I hugged her, thanked her for saving my life, and asked her what she would most like me to say about DBT in my Active Minds presentations. Her response was, “Just tell them we need more clinicians to get trained.” It hit me hard. Of course you can’t recover if nobody knows how to help you.
When parents come to me in desperation, their story is almost always the same: their kids got fed up with treatment and/or medication, and dropped out of therapy and/or stopped taking their meds. While the willpower and determination to recover can only come from within, I understand why people give up on recovery. When you’re not getting the right treatment, it starts to feel like there is no right treatment. By the time I made it to DBT, I was so jaded I didn’t expect it to work. However, I was desperate and exhausted from doing battle with my mental illness every day, I was sick of constantly mourning ruined relationships, and I decided to give recovery one more shot.
Luckily, this time, it worked.
I don’t think I would have recovered if I hadn’t been in New York City. I had access to the Payne Whitney Clinic at New York Presbyterian, which has one of the best DBT programs in the country. Because New York offers excellent Medicaid coverage, I was able to attend the program without paying out of pocket. As a result, I haven’t had a psychiatric hospitalization since 2005. That alone seems miraculous to me – except, of course, that it’s not a miracle at all. It’s the result of my hard work, guided by competent, well-trained clinicians. It’s an example of what evidence-based treatment can do for those who have decided to recover.
The advice I find myself giving most often, about a variety of situations, is, “Read books and talk to people who are different from you.” To that, I would add, “Become an activist.” If you can’t convince your child to recover, devote yourself to working for better recovery resources. Talk to clinicians in your area about DBT and ask them to consider getting trained. Write to lawmakers in your state about the importance of funding the continued professional education of mental health care providers. Find out what you can do to bring DBT training to your area; it’s easier for clinicians to learn the skills if they don’t have to travel. Get involved with NAMI, the National Alliance for Mental Illness, or another mental health advocacy organization in your area. Keeping spreading the word that BPD is treatable, but only if treatment is available.
There is more to life than the pain that leads to chronic suicidality, but your child needs a compassionate, well-trained guide to navigate the way out of that pain. Activism is the key to improved treatment, and improved treatment is the one and only key to recovery.