Talking About Mental Illness
Stigma, privilege, and mental health.
When I was fifteen years old, I stood in my kitchen bouncing a ball. To this day, I’m not sure what was so entirely aggravating about bouncing that ball, but something certainly was. My father yelled at me to knock it off, and I sullenly ceased to bounce the ball.
CC-BY Jinx!, filtered.
This wasn’t an unusual thing for me; I had a pattern of annoying behaviour. What made this time different, though, was the question my mother asked:
“What if there’s something wrong with him?”
My parents took me to get tested by mental health professionals. For three days, I would leave school and go sit in bland rooms with no real distinguishing qualities. And for a few hours at a time, I would be tested. They tested things like my auditory processing and focus, asking me to push a button when I heard a sound and counting my errors of omission or commission. They tested my memory, asking me to memorize patterns and sequences, then repeat them. They tested my ability to pronounce meaningless words.
They also gave me the tests I expected: ink blots and self-evaluations, questionnaires and open-ended interviews.
When my mother called me into her room to talk, I knew the results had come in. I’ll never forget that conversation. She was fine as she told me that, as they expected, the doctors found that I had Attention Deficit Hyperactivity Disorder. And I thought “Awesome, so now ‘annoying’ has a technical name.” And then she started crying, and told me that the doctors weren’t really concerned with the ADHD. They were concerned with the severe levels of depression they found, and informally suggested my parents may wish to consider taking me out of school.
Oh. So there was something wrong with me.
Mental illness is an insidious thing. Much like Keyser Söze, it tries really hard to make you believe it doesn’t exist. It will plant the seed of doubt in your mind: are you just being lazy? Are you really ill, or is it an excuse?
This is exacerbated by well-meaning people who ask if you’ve tried to be happier, or if your anxiety can be solved by not thinking about it, or the suggestion that if you just relax, things will be better.
Impostor syndrome runs deep in the individuals with mental illness I’ve come across. As your mental illness tries to convince you that it doesn’t exist, that you’re just lazy or stupid, sometimes you start to believe it. Even if not fully, you underestimate the strength of it. A lot of people I’ve spoken with have expressed the concern that they’re not sure their mental illness really counts. Like the fact that there are people with more advanced degrees or more disruptive forms of mental illness somehow makes their mental illness less important.
We’ve internalized the stigma to the degree that it’s actively fighting against getting treatment, because it hurts to admit that you need help, and can have serious career repercussions. A lot of opportunities require everything you have; they expect you to put your life into your work for a short amount of time in exchange for high rewards. If an employer decides that you can give less than another applicant because you may need special accommodation or you’re struggling with something else in your life… those opportunities aren’t open to you.
Until I “came out” as mentally ill, I was afraid of being discovered. I went through high school without any assistance programs that could’ve helped me, because I didn’t want people to know what I was going through. To this day, it’s still hard to admit that I have a therapist’s number in my phone. It’s uncomfortable. We’re taught that our emotions make us weak; that masculinity means rubbing some dirt on it, and that if a woman has emotions she is being hysterical or dramatic. Technology is not exempt from this culture, and it has subtle pressures of its own, too. It’s a relentlessly shifting industry that requires after-hours work to keep up with, which is hard on mental health. And to admit that there’s something off about your brain is to admit that your primary tool of the job is somehow broken or damaged. I make a policy of informing any potential employer about my mental health issues during the interview stage, and I’ve watched it cost me jobs. The company that was keen on you yesterday suddenly takes forever to answer your emails. Everyone likes you and the recruiter says you’re a good technical match, but you’re not a “culture fit”.
I wanted to create a way to fight the stigma, to say “yes, I am struggling, but you know what? I’m getting by. And I’m going to celebrate that.” But I also wanted to create a resource people could check and see that yes, sometimes when you have depression it can utterly wreck your sleep cycle, and no, it’s not just you being lazy.
In September 2013, I started working with volunteers across the tech community to publish interviews on mental illness. I called the project gets by, and I had two stated goals in running the program: decrease the stigma around mental health, and increase the resources available to those who were struggling with an illness and thought they were alone.
My interview on gets by
Since starting gets by, I’ve spoken with a wide range of people. Some people have depression, and don’t have a lot to say about it. Some people fall on the autistic spectrum. Some are struggling with PTSD or crippling anxiety. The format of the project is simple: I give contributors a few sections to talk about, as a prompt to help them start to talk about something they may not be comfortable talking about. But this is their story, and they’re free to change the prompt or omit things or add things as they see fit. Most have stuck with just talking about their diagnosis, their experience with medication, the struggles they face, and their strategies for coping with those struggles. But one of the more important parts of the project, in my mind, is that it aims to be a safe space to write about these things. Contributors own their contributions. Nothing moves forward if they don’t give approval at every step. I pledge to take down their contribution and do anything in my power to erase it from the internet at their request, no questions asked. These are not my stories to tell, and I want to make sure that anybody who shares is comfortable doing so. This is hard enough to do already.
When I started the project, my intention was to put a name and a face next to every interview. I wanted to be able to show the world a list of people who had an illness and were not ashamed or afraid to say so.
When I was approached by the first person who wanted to do an anonymous interview, though, I asked for a few days to consider it fully, noting my concerns and objectives. Now, the anonymous interviews on the site are some of my favourite ones. They show people who aren’t as at peace with their diagnosis as I am, people who don’t feel like they’re getting by. But people who still want to share what it feels like and to help anyone they can in doing so.
I realized that not everyone has come to terms with their illness the same way I have. I realized that not everybody has the same robustness of employment, and may not be able to weather any negative repercussions the way I’ve been able to. I realized that not everyone can share their vulnerabilities, the things that make them feel weak and ashamed, with the public and have the public support them, instead of honing in on those chinks in the armour.
I realized that my privilege was skewing my perspective on the issue. It wasn’t the last time I’d realize that.
In October 2013, I was invited to speak on a panel at Brooklyn Beta with Ed Finkler, Christopher Murphy, and Simon Collison. We talked in an open panel about our experiences with our various mental illnesses, then answered questions and talked with people in the audience who wanted to share. The panel was sponsored by Engine Yard through the Prompt program they established in August 2013.
Prompt describes itself as “a means of encouraging a conversation about mental health at tech conferences and meetups”. While Eamon Leonard–who founded the program, along with Ed Finkler, John Dalton, and Greg Baugues–explains that ending stigma is an important part of the program, he stresses that it’s also about making good on a promise to developers:
“Our (product / service / software) makes developers’ lives easier”. How often have you heard that phrase? It’s often used by companies that make tools for developers. We’ve said it ourselves, here at Engine Yard.
The real meaning of that phrase, however, is “we make developers’ work lives easier.”
Prompt is an effort to actually try to help improve the lives of developers, especially those who are affected in any way by things like depression, anxiety, or any other mental illness.
Since Brooklyn Beta, I’ve spoken at phptek 2014 in Chicago, and will have spoken at Distill 2014 in San Francisco by the time this reaches publication, with the support and funding of Engine Yard. Every event to date has been a welcoming, respectful experience. Support and encouragement have never been absent. There are also results: at least a few people have come forward to say they sought treatment after attending a Prompt talk, after hearing their lives reflected in the stories the speakers told.
It’s important to note that none of the speakers at Prompt are mental health professionals, and it isn’t designed to provide medical advice or encourage or discourage people from seeking treatment. What is striking about my experience with Prompt is the intimate, emotional setting created by these discussions. Mental illnesses can be one of the most difficult things to talk about, due to the stigmatisation of “feelings”–which are used to dismiss women and emasculate men–or the shame a person feels about being “broken”.
It’s been pointed out that part of the warm reception to Prompt may have something to do with the makeup of the speakers: all white men. The privilege of white male voices in our community — being more accepted and welcomed — may be skewing the results.
The representation is obviously skewed: a larger percentage of women than men have a mental illness, and other races have similar or larger percentages. And while speaking about mental illness is never easy, it isn’t hard to imagine why it’s difficult for some and impossible for others. To admit weakness is a privilege; if you’re a minority working in tech, you already have to combat and overcome challenges in the industry. Lack of representation, harassment, and doubts about your abilities are already stacked against you. To publicly say you’re struggling with something might not lead others to try and help you or understand; it may guide harassers to your weak points, serve to rationalize prejudices and misconceptions, and keep you out of opportunities that you already need to fight for.
One of the things I’m looking to do, moving forward, is have a more diverse and representative group of people in the conversation.
But Prompt was only meant, as its name implies, to start the conversation. Engine Yard is a technology company, not a mental health research institute. The speakers are developers, not psychiatrists or mental health professionals. And that is part of the power of this conversation: these are your colleagues, your friends, your neighbours. These are people you work with and see every day. These people could very easily be you.
That is also the limiting factor, however. Engine Yard has a few people that work on Prompt in addition to their other duties. The loose collection of speakers around it all have day jobs and projects of their own to attend to. In addition to the eleven people with public interviews on gets by, a staggering eighteen people expressed interest in contributing but fell off the map at some point in the process — a churn rate of 62%.
The biggest challenge facing this discussion right now is that nobody has the dedicated time for it. Which is not a criticism of those who are spending time, or those who can’t find the time. This is our conversation to have, as a community.
Engine Yard was never meant to be the only company in the space investing in the mental health of the community. The speakers speaking were never meant to be the only people talking about it. The express purpose of all these programs is to include more people in the conversation.
Getting involved is easy: sign up for a Mental Health First Aid class. Talk to your employer about doing a company-wide First Aid class. If you’re comfortable and safe doing so, blog or tweet about your mental illness, or contribute your story to gets by. Include mental health in the personal wellness initiatives of your company. Check your company’s support for mental health resources and their protocols for taking mental health days. Speak at your local meetups and conferences about your experience with mental illness. Donate to, invite a speaker from, or become a speaker for Prompt. Sponsor someone else to go speak about their experience.
The tech community is known to be an at-risk community for certain kinds of mental illness, thanks to the isolation, intense creativity required, and high pressure of the industry. Just like back injuries and ergonomics deserve our attention, so too does our mental health.
Let’s talk about this together.