• The stigma of mental health

    Earlier this week, when I linked to a post at Gawker by a woman whose son has extreme mental health issues, I got a ton of feedback from you. Many of you were upset by the post, mainly because you felt the mother had done terrible harm to her son by making his issues public.

    While I understand your concerns, they make me sad. After all, if her son had asthma, or hemophilia, or cystic fibrosis, I’d wager none of you would have had these concerns. But mental health carries a stigma, and therefore many people believe that this mother did wrong by talking about it in public.

    I’m reminded how people used to feel about HIV and AIDS years ago. It had to be kept secret, because people would react so poorly about it if they found out that those who were infected often carried the burden in silence. It was only after an enormous amount of education and outreach that people carrying the virus could feel free to be open about it. Even so, things are not perfect today. I know any number of people who are still misinformed.

    Even more people treat mental illness this way. It’s an illness, and it needs treatment, and we should neither shun those who are affected by it nor those who would talk openly about it.

    Lisa Lambert said all this better than I just did:

    The best way to get help for your child with mental health issues is to talk about what’s going on. But most of us don’t, especially not at first. Adam Lanza’s mother, Nancy, was reportedly quiet about his problems. She was happy to talk about gardening, the Red Sox and her hobbies. But she was quiet (publicly at least) about her son. I have been, too. We learn to be.

    She goes on to talk about her own son, who has had issues with mental health. Specifically, she talks about the difficulties she had talking about this not only in public, but to people close to her:

    When this first began, I told other mothers about it. They were the parents of his friends and had known him since he was a baby. Some of them would try to make me feel better. “All brothers fight” they’d say, “Yours are just more intense.” Some would look at me with horror or, worse yet, tell me to try things that I’d done long ago and found pretty worthless. It was clear that they thought it was either my skills or persistence that needed shoring up. I learned to avoid these discussions and got pretty good at deflecting questions. I learned to be quiet.

    It isn’t just friends you are careful with. It’s your child’s teachers, his pediatrician and many others in his life. We all live in a society where the stigma around mental illness can stop us in our tracks. It’s far more serious than a lack of understanding. People repeat things to you that cut you to the quick and you learn not to tell them what you are going through. Instead, you talk about the Red Sox and gardening.

    Then we turn to the mental health professionals, who we think, have seen all of this before. We learn once again, that we are often on our own. Insurance pays only for short visits with lots of paperwork requirements. There is a shortage of mental health professionals with expertise on the most “serious” kids. Parents like me are told, “I’ve done all I can for your child” and we observe he is not much better. We learn to manage the crises, lower our expectations of help and keep going because we know the burden falls on us in a way that would be unthinkable with another kind of illness. I’ve read that Adam Lanza’s mother found that only she could defuse his crises. I’m sure that’s what she did until she couldn’t any more.

    I tried to get at that last paragraph in my piece at CNN, but it can’t be said enough. You should go read Lisa’s whole piece.

    Illness is illness is illness. Our first reaction to hearing about it should be to express empathy and concern, not to tell others to hide it and keep it locked away. Unfortunately, when it comes to mental health, we still have a long way to go.

    @aaronecarroll

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    • You’re exactly right. Many mental illnesses respond to medication, demonstrating that it is a physical problem with mental symptoms. For those illnesses for which medication has been unhelpful, the lack of response doesn’t mean it’s not an illness. It means the right treatment hasn’t been found. Perhaps someday we will look back at the way people with mental illnesses have been treated and be shocked, just as we are shocked today to look back at the old-style lobotomies — metal wands being inserted through the face to scramble the prefrontal cortex. Mental illness also is a continuum, and everyone experiences something on that continuum in their lifetime. We need to learn empathy for those who are sick, in any form.

    • Remaining silent keeps the mentally ill powerless. Look how easily defunding mental health services was. Who protested? When our criminal justice system, county jails, and correction facilities are now our largest mental health institutions it speaks volumes.

      Lisa’s an extremely brave Mother. I know several like her who struggle daily to get and keep their mentally ill children in care even harder after these children age into to adults. How they do it I don’t know, it’s mostly by luck if they find the right clinician.

      We know so little about children with moderate to severe mental health conditions and it not hard to understand how people (clinicians and providers) become frustrated with young patients who don’t respond to standard treatments. Especially since many of these professionals are so poorly reimbursed by Medicaid or private insurance plans. A concerned public must advocate for more research, better care, new laws, and for more professionals.

    • I knew a parent of a man with intellectual disability and autism. He’d always been prone to anger when frustrated, but sometime in his 30s or 40s, a combination of his increasing violence and his mother’s aging got to be too much for her to manage. The only solution was to have him committed to a facility that strongly resembled a prison where he was drugged into a drooling stupor.

      His mother exhaustively looked into her options. She’d been an activist in parent autism advocacy groups for decades. She knew sympathetic state senator. She did everything she could and only committed her son when she was convinced that he’d cause her major injury.

      There aren’t options for potentially violent people with mental illness and it’s all too common that they living with the mother or being drugged into vegetation locked in a cage. It should come as no surprise that mothers with potentially violent kids don’t choose the latter until their life depends on it — and some wait too long.