After 30 years of hiding it, a small-town mayor says he can talk about his misunderstood, maligned mental illness: OCD

Grayson Vandegrift

By Grayson Vandegrift

I feel more freedom today to share something I’ve been hiding from the public for nearly 30 years. I have Obsessive-Compulsive Disorder, a mental health diagnosis that I was given at age 12 but which began around age 8.

In popular culture, OCD is referred to as a joke. People think of it as the clean-freak disorder, or the thing that makes you want to straighten everything. I don’t straighten anything and I barely ever clean much at all. OCD is in reality a horrifying and complicated disorder that, in its best oversimplification, can be thought of as “uncertainty intolerance.” A person with OCD becomes fixated on things personal to them — it tends to attack the things you care about most — and causes an overwhelming anxiety that the brain says can be fixed by completing compulsive rituals.

It’s a lie, of course. While the compulsions bring momentary relief, what they are really doing is creating a harmful feedback loop that only makes the obsessions worse in the long run. I’ve watched my kids breathing at night to make sure they’re ok, all the while performing a mental ritual to convince myself it’s ok and that I can go to sleep myself.

I’ve washed a kid’s spoon over and over because I’m afraid it’s been contaminated and could hurt one of my children. For eight years, I’ve loved being mayor of Midway, Kentucky, so much that I feared that I would — or did — resign the position without meaning to.

As preposterous, and probably funny as that may sound, the fear would consume me so much that I would spend hours, days, and sometimes weeks on end (not constantly, but the breaks in between were extremely short) checking news articles or looking at my name plate at city hall over and over again.

There were times I became so overwhelmed by it that I would break down into a type of despair and anxiety that makes it hard to get out of bed. One of the saddest things about OCD is that we know it’s ridiculous, and yet we’re compelled to engage in it.

The point of my saying this now is that OCD, and mental health in general, is horribly misunderstood in our society. I only know about OCD, but after 32 years of my 40 years on earth having had it, and most of those years taking prescribed SSRI’s and going through cognitive-behavioral therapy, I can truly call myself an expert on it.

My suggestion to people is to please stop using OCD as a punchline. We with OCD suffer mostly in silence — thank God for family — and hearing someone use “OCD” as an adjective is extremely hurtful. But we don’t have a community, there are no support groups that I know of and there’s no movement for people to understand this often debilitating disorder.

I even recently heard a doctor that I respect very much making light of OCD. He referred to it as if it was an advantage because he thought it made people pay more attention to detail. It’s actually the opposite. People with OCD have a full time job that pays nothing, that no one sees, and creates disadvantages to health and happiness.

In my whole life I’ve only known two other people who have OCD. This is alarming. Statistics indicate that 1 in 100 Americans are afflicted with it. I have heard many people claim to have it, almost as if it’s cool, but I can tell from the carefree way they speak about it that they really don’t have it and that they’ve made a self-diagnosis based on their understanding from pop culture. But there are many people out there, suffering in silence. Sadly, they often never seek help.

Even more distressing, it’s not easy to find a therapist who specializes in OCD. When my therapist retired, all that was available to me was tele-health visits with therapists in other states, or a wait list of months and months. I’ve been managing it myself since his retirement, the best I can. I’ve had a lot of training at it and can manage it on my own now, but it never goes away, and it never will. If you or someone you know might be suffering from OCD, it doesn’t have to define you. My therapist used to tell me he was amazed that I chose to get into politics — one of the most uncertain things ever!

One can manage OCD to a point where it no longer consumes you. But you have to have help to do that. The most recommended approach is a combination of therapy and medication that can help regulate the serotonin deficiency (that seems to be the best understanding in medical science of why OCD happens — some kind of misfiring of serotonin in the brain not making it to the synapses as intended).

Cognitive behavioral therapy is the most recommended therapy, eventually leading up to something called exposure and response prevention. That is a very difficult process but in time it retrains your brain to ignore the obsessions, rather than engaging them with compulsive behavior. I still have good days and bad days with it.

Sometimes in exasperation I’ll tell my wife, “It’ll never end until I’m dead.” While it’s sad that this is true, I hope that more people who have this awful thing know that it can get better, and you can be happier.

If you have OCD, I love talking about it to fellow sufferers (well, there’s only been one friend in my life who also has it, but it helps me to talk to him about his.) But I’m not a therapist, and therapy and talking alone won’t be as successful as a combination of a clinical prescription and talking to a licensed therapist.

My hope is that our culture will begin to take time to understand this mysterious and horrifying disorder and in turn, stop talking so callously about it. While I have hardly ever been mad at a person who does that — I understand they’ve been misled by popular culture — it is extremely painful to watch your most debilitating feature be lampooned.

Either way, I got something off my chest that I’ve been carrying a long time. OCD has no cure, it provides no upsides, and it is constant. But it’s not death. It’s a challenge you have to do your best to overcome if you have it. I hope those who don’t will begin to take a little more care with how it’s spoken about in our culture. But if you do hear someone making fun, there’s no need to make them feel bad, and it’s certainly nothing worth “canceling” someone over.

The brain is a wonderful and mysterious thing, and as Milton once wrote, “can make a heaven of hell or a hell of heaven.” Mental health is the hidden crisis in our world. Only understanding can make it better.

Grayson Vandegrift is mayor of Midway. After two terms, he did not seek re-election but ran, unsuccessfully, for the state House. This was first published in the Lexington Herald-Leader.