[Editor’s Note: This piece is part of an ongoing series of personal essays on what it’s like to live with a mental health diagnosis. Each piece describes a singular and unique experience. These essays are not meant to be representative of every diagnosis, but to give us a peek into one person’s mind so we may be more empathetic to all. Trigger warning for OCD, anxiety, and violent imagery. Those struggling with these disorders, or those who find themselves suggestible or find it difficult to deal with upsetting thoughts, might choose to avoid reading the piece.]
We’ve all had times when we’ve thought, I embarrass myself whenever I open my mouth. And most of us know how to move on from it. But when you have OCD, you have a different kind of relationship with thoughts. They don’t roll off; they linger and intimidate you into doing things you know are irrational.
The fear of getting sick might lead you to wash your hands in dangerously hot water. The fear of getting robbed may lead you to check your locks 32 times. And the fear that you’re breathing or talking incorrectly or unnaturally, might lead you to interfere with your breathing patterns.
I experience somatic, or sensorimotor, OCD (SOCD). It’s a type of “pure-O” or “bad-thought OCD,” which means that compulsions aren’t always physical actions; they can also simply be rituals performed mentally, in response to excessive unwelcome thoughts. I spend a lot of time trying to purge thoughts or negate them with reassuring counter-thoughts. “I like that waiter, so it doesn’t mean anything that I just pictured tripping him while he balances that heavy tray of dishes on one hand.” “I love my sister, so it doesn’t mean anything that I just pictured decapitating her with a machete.” (The bad thoughts can themselves be pretty outrageous—not to understate how upsetting they feel.)
What sets sensorimotor OCD apart from other types is that the obsession concerns a bodily process, one that is involuntary, but often can be controlled. One day, a thought such as “What if I never stopped thinking about swallowing?” pops into your head, and then, you can’t swallow, if only for a little while. But since the thought refuses to go away, you spend hours trying to un-think it. Obviously, this is a Sisyphean, doomed approach: fighting the thought makes it cling even harder.
Certain events will set off some obsessions more than others. Outside of these events, one might even feel completely functional and happy. Since in my case, the anxiety is largely a social one (which is not unusual), I’m mostly fine on days when I don’t have to verbally communicate with people—as long as I don’t think too hard about my breathing. But invariably, at some point during the week, I’ll have to make a call, go to the drugstore, or take an Uber ride.
If I’m meeting friends or romantic interests, as opposed to strangers that probably won’t remember me, I’ll look forward to the encounter that much less. The happiness and excitement that someone brings me is directly proportional to the amount of dread I will experience before spending time with them. It’s also proportional to the amount of time I’ll spend on additional compulsions, like reading up on the mechanics of vocal production and attempting to pinpoint the “one thing” I have to fix about my speech.
Eventually, the interaction happens, which is usually as bad as I anticipate. Commonly, people with pure-O, bad-thought OCD are so scared of making their obsessions known and so good at keeping them hidden, you’d never know on your dinner date that they’re running through the old, familiar thoughts about touching germs or tripping the waiter, and then all the familiar counter-thoughts. I wish I could say the same for myself, but my rituals have spilled, again, ever so slightly, into the realm of the visible.
And so once the voice in my head says, “Stop! You’re going to initiate sound wrong!” and I don’t finish inhaling, I see my friends squinting at my face as I work harder to make sound and shape my mouth on limited air. People struggle to read my lips a lot, especially elderly people, and sometimes subconsciously start mouthing my poorly shaped words with their own mouths. That’s the worst. To discourage people from staring at my face too long, I look around a lot while speaking, which I’m sure sends other signals. It’s a terrible feeling, not having control over the way you represent yourself, especially when you’re a control freak, and especially when you’ve effectively engineered your own lack of control.
For the first 17 years of my life, I was the world’s biggest chatterbox. As a baby, I screamed so much that the town librarians would cower under the circulation desk when my mom came to check out picture books. When I got older, she would tell me, Hannah, think of what you’re going to say and cut it in half. Eventually, I became a champion high-school public speaker and the president of the competitive forensics team.
But for about 10 years, I also experienced social ostracization at school—my peers would ignore me, fall silent when I joined the table, and make fun of me (and sometimes get our teachers to join in). My parents were in an unhappy marriage, and being at home was just as miserable. By the time I arrived at college, I’d gathered all the concrete blocks and metal bars to build myself a sad but safe prison cell in my head. Meeting women who thought I was cool and men who wanted to date me was the last straw; I couldn’t deal with the fear and indeed the conviction that they’d stop liking me. Then came the bad thoughts and the compulsions.
After a dinner date, I’ll turn to techniques I’ve learned through dialectical- and cognitive-behavioral therapy. It’s the only way I can avoid sinking into my pit of occasionally suicidal despair, as my thoughts turn to the worst-case scenario that lurks beneath and drives these obsessions: that I can’t be in serious relationships anymore or do anything else that involves speaking at length, ever, due to this self-imposed speaking tic.
I count my many blessings, consider those who have it worse than me, reflect on the positive aspects of being so sensitive. I engage with spirituality; talk to my parents (I’ve rarely addressed it with friends); and do the things that bring me joy—well, those that I haven’t yet managed to ruin for myself. I think back on the upsides of this disorder in my life so far—learning that others’ hostile or tense social behaviors may be expressions of their masked insecurities. I try to become a better listener and understand what a profoundly human thing it is to want to speak and be heard. I try to become a better writer.
For obvious reasons, trying to focus on my breathing is not a great calming technique. I also occasionally convince myself I’m “doing mindfulness wrong.” But my favorite aspect of mindfulness is that it “out-metas the meta”—if I get caught up on the “how,” I can simply turn my attention to that instead, and then you’re still being mindful. So I practice mindfulness, too. And sometimes I meditate. And when I’m feeling very strong, I cautiously turn my attention to another thought. The big one, the one I’ve been fighting or avoiding, that I’ll be stuck like this forever.
With OCD, the compulsions can make the fear even more fearful. The only way to really, truly move on, as taught in the standard ERP and ACT approaches, is to accept it with its terrible implications. The idea is that through this, I could understand that my fears are just thoughts, not destiny. And even if these fears are destined to happen, life would go on.
I have a memory of being three or four and crawling into my parents’ bed one morning when they were asleep. I sat on their pillows and listened to their slow, deep breaths that seemed to originate from some distant and primal place. I slowed the rising and falling of my breath to synchronize with theirs, and never did it occur to me that by controlling my breathing, I was somehow ruining it, or would have to carry the weight of somehow fixing it again. I remember this as I get ready for bed now. I close my eyes and turn my thoughts to the hope of being free one day. I turn out the lights. Then I tumble into that deep, primal world of sleep. And for the next few hours, I breathe just fine.
The “A Day With Mental Health” series is brought to you by Headspace and Bring Change to Mind (BC2M). BC2M is a nonprofit organization built to start the conversation about mental health, and to raise awareness, understanding, and empathy. They develop influential public service announcements (PSAs) and pilot evidence-based, peer-to-peer programs at the undergraduate and high school levels, engaging students to eradicate stigma. Because science is essential to achieving this mission, BC2M’s work is grounded in the latest research, evaluated for effectiveness, and shared with confidence. Headspace is proud to partner with them as we shine a light on the day-to-day experiences of living with a mental health diagnosis.
This series will publish weekly on Headspace’s the Orange Dot. Read the rest of the series here.
Artwork by KAREN HONG