“If I don’t understand it, maybe I can listen and dialogue until I do, because ultimately, what affects one of us affects all of us.”
Long before the phrase “So say we all” was made famous in Battlestar Galactica, it was a phrase used at the end of communal prayers in some spiritual circles. It’s a form of solidarity. After I post an Instagram about OCD, I often type in something like #mentalhealthawareness next to my various other hashtags about OCD. But really, there are people out there dealing with a spectrum of mental health issues, and while we can’t champion every cause that comes our way with extreme specificity—there just aren’t enough hours in the day—I do think we can get behind others who deal with mental health issues. It’s about all of us, really. I have obsessive-compulsive disorder, but I know people who struggle with other issues: depression, bipolar disorder, autism. These things can be comorbid with OCD. We have to expand our sphere of awareness, not only our compassion, to welcome them as well.
I’ve dealt with this in other areas of my life too. I recently befriended someone who shared with me that their son was gay. When I told with them that my oldest child was queer, we had even more to relate to. However, when I mentioned that they were also nonbinary, they tilted their head to the side, looked at me strangely, and said, “Now, I just don’t understand that.”
As I’ve gotten older, I’ve become more and more okay with this reply. Hey, as long as they aren’t clubbing me over the head or fleeing from the room, I look at it as an opportunity. It’s a chance for a dialogue between two people who have something to learn from each other. At this point in our conversation, I explain that from an early age my child cringed when being called “miss,” before they even understood why it bothered them so much. I explain how they told me thinking of themselves as “mister” didn’t feel right either. I wait for my new friend to reply. I listen to their confusion. I breathe. I remind myself we’re all at different places in life. I believe in connection over confrontation any day of the week, and twice on Sunday, as the saying goes.
If I can do this with gender, I can do this with mental health. I may not understand what is going on in someone else’s brain, but I can try. I can listen. I can ask. I can have the conversation.
We’re all at different places on our mental health journey, looking for a little understanding and patience. I hope to carry that understanding to everyone bending beneath the weight of mental illness. If I don’t understand it, maybe I can listen and dialogue until I do, because ultimately, what affects one of us affects all of us.
“You need to help remove the stigma, not promote it. Be honest with each other when a colleague asks how you feel or when someone attempts to tell you how they feel. You have to be willing to have honest dialog about these concerns if you are ever going to help others, the very reason you likely want to be a physician.” -Doug Smith, M.D., DLFAPA
I’m sitting in Cleveland, Ohio at a Winking Lizard’s restaurant with a plate of something in front of me I know I shouldn’t be eating. Meanwhile, somewhere in Atlanta, my doctor feels a shiver run up her spine, and she instinctively knows that somewhere a patient whom she’s warned about their cholesterol has just ordered a cheesesteak and fries. But as Dolly Parton sang, “It’s all wrong, but it’s all right.” I’m on vacation, damn it.
We’re about to head to the Rock and Roll Hall of Fame but first, it’s lunchtime. Joining me on my foray into this artery-clogging horror is my husband, George, and his friend from way, way, back high school days and their time as undergrads at the University of Maryland, Douglas Smith, M.D., DLFAPA. Doug is a psychiatrist, a Professor of Psychiatry, and the Director of community psychiatry at Northeast Ohio Medical University. Luckily, Doug and George have some goofy stories to balance out some of the mental health talk I came here for, such as Doug’s mad ninja skills as a teenager, including mastery of blow dart guns and throwing stars, and George’s inability to hit the broadside of a barn with any range weapon. I doubt both of these claims to some degree.
Our trip to Cleveland was to catch up with George’s old friend, but Doug has also agreed to write the foreword to my obsessive-compulsive disorder (OCD) memoir, You’re Not a Murderer: You Just Have OCD. I was interested to hear his thoughts, and wow, did he have them. Doug serves on the Board of Trustees of the Ohio chapter of the National Alliance on Mental Illness (NAMI), helps to coordinate a crisis intervention team (CIT), and gives suicide prevention talks.
He mentioned that the CIT course involves the teaching of first responders by people with experience working with individuals with mental illness, and role players with similar experience who act the part of the person in crisis so that police officers and other first responders can practice their enhanced skills of verbal de-escalation. Doug told me he wants the responders to have empathy and understand that, when called to the residence of a person in a mental health crisis, “Although you are just now encountering this individual, you must remember that the family has been dealing with this person day in and day out for years, perhaps decades. When they call for help, your skills will benefit your dealings with them and their loved one, and you and they will have a safe encounter.” Indeed, I grew up, for a time, in a home with someone who had mental illness and know just how fragile these encounters can be.
Doug and I also talked about Harm OCD, and we discussed my concern over individuals with Harm OCD not understanding that what they have is a form of OCD and not a sign that they are bad or someone who should not exist. I told him how concerned I was that many people have taken their lives due to Harm OCD and never said a word because of the shame associated with their intrusive thoughts. We talked at length about how the newer generations are so much more open about letting each other know if they are on meds or need help, yet there are still many places where competition and pressure on students, and in the workplace, is so great, that mental health crises are common.
Doug mentioned med schools, for example, where he gives suicide prevention talks. He speaks to students about the need to have honest dialogs about how they are feeling. He said that he looks at the crowd of students and says “All of you will be around doctors and other clinicians daily the rest of your lives. Shame on you if you cannot ask for help for mental health or substance use issues. You need to help remove the stigma, not promote it. Be honest with each other when a colleague asks how you feel or when someone attempts to tell you how they feel. You have to be willing to have honest dialog about these concerns if you are ever going to help others, the very reason you likely want to be a physician.” He goes on to talk honestly with them about the rate of suicide among health professionals and perhaps in some professions that people might not think of, such as dentistry and veterinary medicine.
My husband, George, was there with us, listening and nodding as he knows this scenario all too well. His ex-wife took her life not long after their divorce. She seemed to be doing much better; he thought she was on the other side of her illness until the police knocked on his door one morning, changing everything.
In my own life, I remember the fear I experienced when my daughter with Harm OCD looked up at me with tears streaming down her face and said, “If the images I see in my head are true”—intrusive thoughts of Harm OCD—”then I don’t deserve to live.” She is now living a rich, stable, full life, thanks to good mental health care.
Now, more than ever, we need good mental health professionals like Doug, willing to show up as he does, in med schools, in front of police officers, paramedics, and even the legislature, for that matter, to inform, educate, and remove the stigma until we’re no longer whispering about this stuff while our loved one circles the damn drain in total silence. It’s time to set aside pride, shame, ego, or selfishness and speak up and out.
“Maybe the person you talk to today doesn’t seem to ‘get it.’ What we don’t know about is the person that individual may meet with tomorrow. What we share, ripples. We don’t know where those ripples lead, but we have faith that they keep going. Thank you to Jeff Herman of the Jeff Herman Literary Agency for ‘getting it.'”
You’re Not a Murderer: You Just Have OCD, a memoir I co-authored with my daughter, won Best Pitch at the 2022 Atlanta Writers Conference, but you don’t have to write an entire memoir to talk about OCD. Share whenever you can. Bring the light.
People who feel called to discuss mental illness with others, especially an often misunderstood disorder such as OCD and Harm OCD, know what I mean by “the look.” The person you’re talking with has likely never heard of it or thought they knew what it was and your explanation is imploding their entire concept of what they thought it meant. Or maybe they are just screaming somewhere in their head, “For God’s sake don’t say, ‘I’m so OCD’ in front of this woman!” Some people have made such a habit of it that they have to train themselves to stop misusing it.
Then again, some people are just uncomfortable discussing mental health. Perhaps these are things they were taught to whisper about in hushed tones. Perhaps they never knew if this whispering was meant to protect the people who were actually suffering or meant to silence those suffering so as to not embarrass the family. Whatever the case, the silence has left legions of people trembling in the shadows, afraid to speak up, and if they’re not speaking up, they’re not getting help. This is why my daughter and I decided to write about our journey with Harm OCD (an intrusive, unbidden, terrifying thought of harming oneself or others). I remain convinced people are ending their lives over this disorder in the belief that they are doing the world a favor by taking themselves out of it. No one has told them intrusive thoughts can be, and often are, Harm OCD. No one has told them, as my daughter’s therapist told her, “thoughts are not things.”
So, we share. It’s that simple. You don’t have to write an entire memoir to talk about OCD. Share whenever you can. Send a light into the shadows where someone is just barely hanging on. Maybe the person you talk to today doesn’t seem to “get it.” Maybe you even get “the look.” What we don’t know about is the person that individual may meet tomorrow. What we share, ripples. We don’t know where those ripples lead, but we have faith that they keep going. Help remove the stigma and bring hope to others dealing with this misunderstood condition. Let them know they can be free.
Thank you to Jeff Herman of the Jeff Herman Literary Agency for “getting it.”
“I want to close the four, take my pen and make one little mark, and I would, too, if I believed that would be the end of it, but it won’t. I’ve been here before…It’s not a number. It’s a trap.”
What’s so powerful it could drag you into its lair with a little mark on a page a millimeter long? OCD, of course. As I’ve gotten older, my symptoms have gotten much less pronounced than they were when I was younger or when they were at their worst in my early thirties after my first child was born. My intrusive thoughts convinced me something horrible was going to happen to her if I didn’t check the door over, and over, and over again. For hours each night this went on. Though those days are years past, those of us who’ve lived with this disorder understand its power to show up in big and small ways. It did exactly that the other day.
It seemed harmless enough. I’d written the number four, looked down, and there it was, something I might not have noticed on any other day, a four where the right angle didn’t quite touch the line of the four. Who cares? Right? Well, no one should, and that’s the point. But this is no ordinary four. Oh, no! That little tease is a gateway to misery. It may as well be whispering, “Let me in.” I want to close the four, take my pen and make one little mark, and I would, too, if I believed that would be the end of it, but it won’t. I’ve been here before. This morning it will be that four, later that evening, I’ll be checking a door that I already know is locked, or I’ll be halfway out of my neighborhood before turning back around to check my garage door even though I know good and well it’s closed.
It’s not a number.
It’s a trap.
I close the notebook and allow myself to acknowledge the discomfort, experience it. I remember a day when this would have felt impossibly hard, and I would have been sure something horrible would have occurred to someone I love if I walked away without closing the four.
I’ve come a very long way to make it to this point where I can walk away…
“It sauntered up to me that night and hissed, ‘Hey, babe, it’s been a while. Miss ya, girl!’ Wink. ‘I’ll keep you safe. Always have, right?’ OCD is that awful, worthless boyfriend we’ve watched our friends make one mistake after another with while we yell at the movie screen that is their life, ‘Don’t fall for it! He’s no good!'”
It had been many years since I’d had an OCD flareup this bad. For me, my intrusive thoughts had been at their worst around the age of 13 and then again after my first daughter was born, when I was 30. Though I’ve dealt with it on and off over the years since then, it had never been as tormenting as this most recent episode: a reminder of why I keep talking and writing about it.
My ex-husband had told me he was picking up my 9-year-old from school that day. He’s not forgetful, especially with his kids, yet I laid in bed that night panicking, thinking, What if he forgot to pick her up and some psychopath abducted her, and we each think the other parent picked her up and meanwhile this whole time she’s been abducted? The OCD started in at that point, and all manner of scary scenarios took root.
Over the years, I’ve gotten good at sitting with the uncomfortableness that OCD brings. But, oh boy, does it ever know how to get our attention. It sauntered up to me that night and hissed, “Hey, babe, it’s been a while. Miss ya, girl!” Wink. “I’ll keep you safe. Always have, right?” OCD is that awful, worthless boyfriend we’ve watched our friends make one mistake after another with while we yell at the movie screen that is their life, “Don’t fall for it! He’s no good!” Hey, it could be a good-for-nothing girlfriend: not picking on the guys here.
But, did I fall for it?
Well…yeah, a little. I didn’t call my ex to verify my daughter was with him because it was 1:00 a.m.—OCD loves for me to prove my love and devotion by missing sleep over it. Bad boyfriend analogy again, right? What I did was go upstairs to my oldest daughter’s room and ask if she saw her little sister while she was at her dad’s house for dinner—little sis spent the night; big sis did not. Well, the eldest wasn’t up late gaming as usual. She was asleep. So, I feigned not knowing that she was asleep the moment I opened the door. Gimme a break—my youngest might have been abducted!
“Oh, uh, I didn’t realize you were already asleep,” I said. “You’re usually still awake.”
“Did you see your sister while you were at your dad’s house this evening?”
Recovering her senses, she said, “Yup, I even have proof. We made a funny video.” She offered proof because she knew what was up with my anxious behavior. She had just finished a yearlong series of ERP (exposure and response prevention) therapy for severe intrusive thoughts.
“Oh, okay. If you’ve seen her, that’s fine.”
Luckily, I could get to sleep with one confirmation. I remember a day when that would not have sufficed. Not at all.
The next day…I was thoroughly busted! My daughter has a check-in with her psychologist every 6 weeks to make sure she is still doing well. From the other room, I heard her ratting me out over telehealth.
Damn it! Are you kidding me?
“Did you tell her she should sit with the uncomfortableness?” the therapist asked. I could hear the smile in her voice.
I was always the one reminding my eldest daughter of all the tenets of ERP over the past year.
Yeah, yeah, the teacher has become the student and all that good stuff. Maybe I’ve gotten a little cocky over the years. At any rate, I don’t resent a little reminder. It keeps me humble. It keeps me mindful of how painful OCD is.