No, I Won’t Be Coming to Your Conference: OCD as a Woman in Tech

We need more education about what OCD is, and what it is not: a punchline.

by Nichole Elizabeth DeMeré on March 15th, 2016

“Oh yeah, I’m totally OCD.”

Well, no, statistically you’re probably not. You might keep your house neat as a pin, but that doesn’t mean we have a disorder in common.

So many people misuse the phrase. And they have no clue. OCD affects only 1 percent of the population. You know how the joke goes – if 99 percent of your friends are normal, then you’re the one? Yep, that’s me. But because so many people claim they have OCD, people I tell tend to not take it seriously. Or they pigeonhole it into symptoms they recognize from watching Monk: germophobia, organizing everything, checking the door locks.

Illustration of cleaning supplies: soap, broom, mop, sponge -- gleaming.

Illustration by Yasmine Sedky.

I don’t have that kind of OCD. For many people with OCD, it’s a much more complex issue. I don’t want to get into the specifics about my rituals, but know this: When I go out into a public space, I might be fine, or I might spiral into worst-case-scenario thought patterns that I have to drag myself out of – if I can get out at all. Social anxiety and agoraphobia are nasty side effects of my particular strain of OCD – the fear of something terrible happening. More than once, I’ve stood in the middle of a public space, teetering on the edge of a panic attack, as my significant other talks me down from the figurative ledge, reminding me that this is “worst case scenario” thinking. Sometimes those words snap me out of my spiral, giving me just enough distance from what I know is an illogical thought to see it for what it is. Sometimes, it doesn’t work.

I haven’t had OCD forever. In fact, it’s a relatively new thing for me – only within the last five years. For  the first three of those years, I was too ashamed to tell anyone about it. I unintentionally pushed away my friends, who wondered why they didn’t see me anymore. Why wouldn’t I come to their birthday parties, or their weddings? Why couldn’t I be there to celebrate the most important moments in their lives?

Before OCD, I had no problem doing these things. I didn’t have any problems presenting at conferences, speaking in front of people, or going grocery shopping either. I’d always taken pride in being a strong person. Someone who isn’t held back or defined by the unfortunate experiences of her past. Strength and independence have always been two of my defining characteristics. So how can I find myself standing outside of a bookstore for fifteen minutes, unable to go in?

It was hard for people who knew me to understand that the sudden onset of a disorder was the reason I barely ventured out into my front yard. When I finally did talk about it, my big reveal was through a Facebook post — appropriate, since social media had become one of my central connections to other people. The funny thing was, the people who responded most to my announcement were acquaintances – even people I’d never met before who connected with me because of our shared interests. It was from them, more than my friends, that I received support, and responses like “I also have OCD. Thank you for sharing your story.” Some of them even recommended medications that they’d tried.

I am on medication, and it helps. But not enough to get me on stage. I feel this way at the bookstore, at the grocery store, in any public space. There is no way I’m going up in front of a hundred or more people. But in my line of work, on stage at a conference is where everyone seems to want me to be.

Microphone standing alone on an empty stage.

Illustration by Yasmine Sedky.

In academia, you have “publish or perish.” In SaaS marketing, we have something very similar: it’s not quite that cut and dried, but conferences, speaking, and in-person networking are incredibly important components of tech careers. As a marketer, especially, you’re expected to not only make your clients successful, but to gather data, write about the data, and speak. If you’re counting, that’s actually four jobs: Marketer, researcher, author, and speaker. If we want to make it to the top, we have to be renaissance people.

It’s already too much for one person to do well, and when you pile a disorder on top of it – it’s even worse.

What’s a woman to do in a conference culture?

In tech, we’re all about our conferences, and I am honored to be invited to many of them. I appreciate it. And you should invite more women to tech conferences (we’re sadly and severely underrepresented). But when I politely decline, the response is often dismissive.

Even though I’ve worked past feeling ashamed, guilty, or like I’m less of a person because of my OCD – and I have – it’s still not easy for me to tell strangers why I can’t attend their conferences, or why I won’t speak at their live seminars. I used to present original research, teach classes, and network in person, and be happy to do it. It’s hard to explain that I would like to do these things again, but OCD limits me in very real ways. So, I prefer not to go into detail about exactly what could or would happen if I were to haul my anxiety-ridden self onto a plane, to a hotel, and onto the stage at a conference. Honestly, I prefer not to imagine that at all – can you feel my anxiety rising at the thought? Sometimes, I swear, my anxiety rolls off of me like sound waves.

When I do try to explain, to say: “I have anxiety, so it’s difficult to participate in that aspect of my career,” often, the first reaction is to push me:

“You just need to practice!”

But this isn’t a mild discomfort with public speaking. This is OCD. It can’t be cured with a membership to Toastmasters (Yes, I’ve had someone make this suggestion to me before). I’ve also had this exchange, more than once:

Me: “I have anxiety, so I can’t attend your conference.”

Conference host: “That’s a chick thing. You’re just being a woman.”

Me: “Um… this isn’t a ‘chick thing,’ it’s a disorder.”

What I’d like to add: “That’s what the ‘D’ stands for – you know, in OCD?”

Social anxiety comes with the territory for many with OCD. And entrepreneurship in tech is socially demanding. Either online or in person, I have to vociferously advocate my work. I’m not complaining. I love what I do and I’ve met incredible mentors and colleagues (online). And I have “workarounds;” I blog and guest post on my industry’s most popular blogs and am extremely active on forums. I realize it’s nearly impossible for people without OCD to get it – you almost have to live it, or love someone who does. But whether or not you understand OCD, please understand this: It’s very real. It’s not something I can control. It’s not going to get better if I just try harder.

So please: Don’t pressure me.

Can we be more welcoming to people with OCD in tech?

Fun illustration of a woman being interviewed by someone off-camera, holding a microphone to her mouth; as well as images of women on computer screens, and someone listening to a podcast on their computer.

Illustration by Yasmine Sedky.

Conferences are a huge part of my industry, but not the only avenue. The focus on conferences in tech culture excludes many people with mental illness, disabilities, caretaking responsibilities, travel and financial restrictions, and more. Luckily, many people do a great job of creating opportunities that I can be part of, like inviting me to guest speak on podcasts or webinars. Providing these alternative routes, and giving all of the avenues that people can participate visibly in our industry equal weight, consideration and funding will go a long way to making the industry more welcoming — not only to people with OCD, but to the many people who can’t or don’t attend conferences for all sorts of reasons.

I’d also like to see us, as a society, stop taking OCD so lightly. At a granular level, don’t say you have it unless you have it. That might mean we need more education about what OCD is, and what it is not: a punchline. What happens when it is the punchline, or just some off-hand descriptor of a behavior that has nothing to do with the disorder, is that nobody takes it seriously. It also feels really crappy to hear about your “OCD” when I’m sitting here suffering from the real deal.

On the theme of awareness, teaching people how to interact with OCD sufferers would be a step in  the right direction as well. Simple things like not pressuring us, or trying to make us feel bad would make such a difference. Invite us, please, but take “no” for an answer. Don’t include guilt with your invitation – it just creates more anxiety over something we can’t control.

And for the love of all that is Holy, don’t say it’s a “chick thing.” Ever. To anyone.

If someone voices their anger over how they’ve been treated – even if they’re just venting on Facebook about yesterday’s luncheon when someone laughed and said “Oh, I’m so OCD”  – don’t police them for it. I see this not just in the context of OCD, but in the context of most marginalized populations – a world where we blame the victim for their honest and justifiable reactions.

Ultimately, I’d like to see OCD research get more funding – there’s no cure, at least not one that’s been found.

*For a wonderful explanation of exactly what OCD is, read 5 Things Everyone Misunderstands About OCD by Hayden Carroll.