My wife Molly and I are dinner guests. The man beside me is swiping his index finger up and down on his lips. A gesture apparently called lip burbling. He’s amused, satisfied that he’s accurately described his “crazy” grandson.
My fork is in mid-air and I am staring straight ahead, willing myself to breathe rather than stab him in the eye with it.
In my head, my butter knife is a Katana and I leap on the table and put it to his throat, Lucy Liu style.
“Do it again. I dare you.”
In my head, I defend my wife’s honor and show the world what decency looks like. In my head, Molly wouldn’t have to endure the many indignities of suffering from mental illness. Not in front of me.
In real life, I pucker my lips and exhale slowly, my hands getting clammy. I’m not a violent person and I am surprised at my rage.
To me, her very existence is enough. More than enough, it is the best thing in my life. She doesn’t have to earn her value, her place in my world. To me, her thoughtfulness, her generosity, her sensitivity, her creativity, her laugh is everything.
If she was battling cancer, no one would expect anything from her. If she was battling cancer, she could sleep or play video games or disappear into a book and we’d all be grateful for another day with her. People wouldn’t assume she’s incapable, while pressuring her to “do something with her life”. There would be no lip burbling. There would be sympathy – pity maybe – but no lip burbling.
But she doesn’t have cancer. She struggles with a disorder that is highly stigmatized: Molly has Borderline Personality Disorder.
Stigma is a set of negative stereotypes and prejudices, that lead to mocking, bullying and outright discrimination. Far more than any other type of illness, mental disorders are subject to stigmatization.
“OK, but what’s the big deal with his lip burbling?” you ask.
It seems harmless, but the infantilization of people with mental illness, the insinuations that they are stupid or lazy is anything but harmless.
Not only does Molly have to cope with the devastating effects of her illness, but she also endures outright mockery at the dinner table. When she returned to school, family members placed bets on how long it would be until she dropped out. Yes, her track record for follow-through before treatment was bad. But with treatment and proper supports, she had the courage to try again. And she graduated.
With honors.
Soon after, she confronted the culprits. First, they outright denied it, insinuating that she made it up. Then they downplayed it as just “kidding around”. She shouldn’t be so sensitive, she was told. After all, she showed them all by graduating, did she not? What was the harm, after all?
This is not an attack on her family. Her family is not much different from anyone else’s. There is love and support. There is also ignorance and judgement. What appears to be “no big deal” can cut deep into a person’s sense of who they are and how much they are valued.
Stigma is not limited to the general public, friends, colleagues or family. The one place that should be safe – the mental health sector – is not immune to prejudice and discrimination. People living with BPD face the label of “treatment resistant”. After months on a waiting list, a psychiatrist refused to treat Molly and referred her to another psychiatrist, delaying her treatment by over a year. We’ve heard:
“We don’t treat BPD.”
“BPD doesn’t respond to medication.”
And my favorite for how blatantly misinformed it is: “People with BPD don’t respond to treatment.”
People living with BPD also resist advocating for themselves for fear of appearing difficult and confrontational – a hallmark symptom of Borderline Personality Disorder.
Despite the lip burbling, Molly defies all stereotypes and bravely insists on treating her BPD head-on. If Molly wasn’t so adamant to challenge her illness, she might have denied or hidden her diagnosis in order to get help. She may have gotten help sooner but if you can’t acknowledge what you actually struggle with, treatment may not be ideal or even appropriate.
We also internalize stigma. There are months when Molly thinks she is beyond help and has nothing to contribute to the world. And yet, she is the first to reach out to someone who is struggling. The first to meet you for coffee when you feel lonely. She is wise and direct and incredibly inventive.
Some people with BPD think they will never have stable, loving relationships, because turbulent ones are another symptom of Borderline Personality Disorder. And yet, she is a loving, supportive and understanding partner, willing to get outside help when we get stuck. We’ve been happily married for ten years now, together for twelve.
Those of us who love someone with mental illness also feel the effect of negative stereotypes. We sit by helplessly while friends or family lip burble, or place bets on our loved one’s chances of recovery and we wait (and wait, and wait) for treatments. (Read more about how I learned to wait here.)
As family members, we are not immune to the effects of stigma. Studies show that just as affected persons internalize public stigma into self‐stigma, we also feel shame and guilt. Hell, maybe we even place our own bets, giving in to despair that things will never improve.
I didn’t place bets, but neither did I defend my wife’s honor while people with mental illness were being disparaged at the dinner table. I sat staring out the window, focusing on my breath while my heart threatened to beat out of my chest. I was furious. I was sad. I didn’t know what to say. I didn’t want to be a rude dinner guest. So I said nothing.
When Molly was hospitalized, I hesitated to tell anyone for several days. I thought it would be better to face it alone than bear the negative perceptions from others. I didn’t have the energy to correct people’s misconceptions, to be looked down on with pity and feel the deep trench this experience would excavate between me and colleagues, or friends, or family.
For a brief time, I hid my pain from others. It felt safer. Terribly lonely and unfair, but safer. I told myself I was protecting Molly’s privacy.
“It’s ok to let people know,” Molly told me. “You need support too.”
She is braver than I.
The next day, I started to disclose what was happening. It wasn’t all bad. I have a few good friends. But there were also looks of pity and awkward silences – the sound of trenches being excavated.
But I wasn’t invisible anymore. I claimed my place in the world alongside my beloved. In my head, I was standing beside my mental health warrior, not hiding in the shadows.
The National Alliance on Mental Illness (NAMI) offers some suggestions about what we can do as individuals to help reduce the stigma of mental illness:
- Talk openly about mental health.
- Educate yourself and others – respond to misperceptions or negative comments by sharing facts and experiences.
- Be conscious of language – remind people that words matter.
- Encourage equality between physical and mental illness – draw comparisons to how they would treat someone with cancer or diabetes.
- Show compassion for those with mental illness. We can be the change and model compassionate attitudes.
- Be honest about treatment – normalize mental health treatment, just like other health care treatments.
- Let the media know when they are using stigmatizing language, presenting stories of mental illness in a stigmatizing way.
- Choose empowerment over shame – Val Fletcher, former deputy commissioner of the Massachusetts Department of Mental Health, says: “I fight stigma by choosing to live an empowered life. To me, that means owning my life and my story and refusing to allow others to dictate how I view myself or how I feel about myself.”
So dear one, whether you struggle with your mental health or love someone who does, fight stigma but be gentle with yourself. It’s not easy. It’s risky. It’s painful. And it takes courage.
So take your time and start with someone who is safe and supportive. Remember, you are not alone. Your voice will be joined to mine and Molly’s and to hundreds of thousands of mental health warriors that are staking a claim in the world. We exist and we are going nowhere. You have the right to dignity and respect. Claim your story. The world is changing because we stand together, hold fast to our loved ones and join our voices.
