Why We Need to Shed Mental Health Stigma
As someone who has learned to tame anxiety, OCD intrusive thoughts, and compulsive hair-pulling disorder (trichotillomania), I’m driven to shatter mental health stigma. Through my work at HabitAware, I know stigma stands in the way of our collective healing.
In July 2019, I gave a TEDx Talk that explains my mental health and startup story. They are one and the same:
As co-founder of HabitAware, I’ve taken my own pain and turned it into my purpose. For 25-plus years, I hid the hair pulling because of stigma. Fast-forward to 2015: My team and I created a smart bracelet, Keen, to help people become aware of their restless hands — and minds. We’ve helped thousands in more than 50 countries take control of compulsive hair pulling and its sister conditions: compulsive skin picking (dermatillomania) and chronic nail biting (onychophagia). These “restless hand” behaviors are collectively known as body-focused repetitive behaviors (BFRBs) and affect one in 20 Americans, who are hurting in hiding. Despite how common these behaviors are, stigma keeps BFRBs from being a household acronym.
Stigma is social rejection. It’s the act of devaluing a person because they are different. Differences in race, gender, social status, and even levels of mental healthiness all cause stigma. Because we are all different in one way or another, most of us have likely been a victim of stigma. And yet the cycle of suffering persists.
Even though we all feel like shit when we are stigmatized, we still keep doing it to each other!
Stigma is a pervasive thorn in our culture. It’s also a giant roadblock along the journey to mental health recovery. Fear of being stigmatized or rejected by peers is why I hid behind a black eye pencil for so long. I didn’t want to give anyone a reason to think there was something “wrong” with me. I didn’t want someone to use my lack of eyebrows or eyelashes against me to shun me or, worse, ignore my existence.
Stigma also creates a “care less” system that is full of disrespect, misinformation, and discrimination. When decision-makers write off people with mental health conditions, we wind up with a health care system in which fewer dollars and hours are allocated to mental health care than other medical services. It’s why a general practitioner may not be equipped with the right resources and may give terrible advice: “Just stop pulling out your hair, Aneela.” Gee, thanks, doc. I’m cured! Not. In fact, just the opposite, as this makes us retreat further into our minds, and the hiding perpetuates the cycle of mental unhealthiness: We don’t get better; we just get worse.
Stigma is a pervasive thorn in our culture. It’s also a giant roadblock along the journey to mental health recovery.
We also get laws, rules, and policies that either overtly or subtly discriminate against people seeking care and support. In an online support group for BFRBs, it’s common for someone to share that they were unable to find work because of their patchy hair, blemished skin, chewed nails, or bloody cuticles.
Stigma is the reason so many people with mental health conditions delay or avoid seeking (professional) help and support.
When I was around 14, my father was diagnosed with leukemia. No one told him, “Ah, buck up.” No one was mad at him for some false perception of lack of self-control. No one berated him for his sick days. No one saw it as weakness, laziness, or irresponsibility for not taking matters into his own hands.
Instead, he was coached and guided by the doctor friends in our community, and my friends’ parents practically took me in as their own child for four years because my mom was stuck by his hospital bedside. If my father had a mental health condition, would they have reacted with such love and support? Or would they have built a wall of stigma around us, inhibiting us from getting the care he needed and deserved?
When someone is physically sick, we rally behind them. Why can’t we offer such love and support when it’s the brain that is sick?
Western culture separates mental health from physical health, even though the mind and body are one. The brain is a physical organ that is the center of our physical health. Through a system of neurons, the brain controls the rest of our physical body, like the lung’s breathing or the heart’s pumping blood. But our brain also controls what our mind is thinking.
And I think this is where the line is drawn. We think that because we create our thoughts in our mind, we are in control of them. This perception of control of our thinking makes it harder for others to empathize when the brain gets “mentally” sick versus “physically” sick.
But we are not always in control.
Tell me: How many times a day do you think, “I need to breathe in and out,” or, “I need to pump blood now,” or, “I need to regulate my blood sugar levels now”?
Our brain does all these things on autopilot.
It’s time to recognize that sometimes our brain also does our thinking on autopilot — and this manifests as anxiety, OCD intrusive thoughts, pulling out hair, picking at skin, or some other “mental” behavior that we really are not controlling.
Mental health awareness efforts shatter stigma by providing knowledge and building empathy.
Interestingly, I believe mental health stigma can be “treated” in a similar way to mental health conditions by adapting a therapy tool called the cognitive triangle. The cognitive triangle shows that our thoughts affect our feelings, which in turn affect our actions and reactions, and vice versa. It is a useful tool in cognitive behavioral therapy to help people with mental health conditions practice moments of pause and mindfulness to acknowledge our thoughts, which in turn helps us reduce negative feelings, which in turn helps us reduce spontaneous, unwanted behaviors. Like, say, when I used to pull out my hair (behavior) because I was stressed (emotion) that I wasn’t going to pass an exam (thought).
I’ve adapted the cognitive triangle to create the stigma cycle: Stereotypes are negative judgements (thoughts) about a group, which leads a person to have a prejudice (negative emotion) against the group (for example, fear, disgust, anger, or even indifference). This visceral reaction promotes discriminatory behavior (action) that shuns the group from the rest of the community.
We can stop this negative stigma cycle. In the same way that our HabitAware Keen bracelet helps people practice awareness of “restless” hand movements or body-focused repetitive behaviors and use that moment of pause to make a new choice, we also need to practice awareness of stigmatizing thoughts, feelings, and behaviors. When we feel ourselves reacting from a place of stigma, we need that level of awareness to ask ourselves, “Why?” And, “Is the thought behind the stigmatizing reaction really true?”
Stigma feeds off a lack of education and compassion. Mental health awareness efforts shatter stigma by providing knowledge and building empathy. Fact-based messaging is often used to educate, but storytelling has the greatest power to make a lasting impact on reducing mental health stigma.
Storytelling creates connection and conversation and allows us to open up in a way that fact-telling, protest, and finger-wagging cannot. It was my privilege and honor to share my trichotillomania story on the TEDx stage. I am humbled to be a voice for the underserved BFRB community and to serve them through my work at HabitAware. Shedding my trichotillomania secret allowed me to release the baggage I was holding. I hope my story inspires others with BFRBs — and other mental health conditions — to share, and I hope my story inspires compassion within the broader community.
In the sharing of stories, a common thread emerges: In all of us lives the need to be seen and accepted for who we are. An irony emerges as well: Stigma makes us want to conceal our pain, but to shatter stigma, we must reveal our pain and mental health stories.
To care, we must be aware.