Tim Blue and I met the way I’ve met so many of my incredible “OCD friends”—at the national conference the International OCD Foundation puts on every summer. (Seriously, you should go!) He’s such a nice guy, and we have a lot in common, which is always refreshing. In fact, that’s kind of the idea behind his blog and Facebook community, To Know We Are Not Alone: There are others out there like us, so let’s help each other! Let’s not suffer in solitude when someone else with OCD is right there on ye olde Internet ready to chat.
You have a great blog—and also a Facebook community—called To Know We Are Not Alone. How did this come about?
Frankly, my blog came about because I battle intense loneliness, especially in regard to my mental illnesses. I’ve found that people who are mentally ill tend to either keep it to themselves or keep to themselves. It’s very hard to find people who truly understand. I originally intended that the blog would become a forum for community. It has, but only to a very small extent. I guess it has served to help me find people who appreciate what I’m doing, but I don’t think it has done much to help others find new friends. I’ve decided to take the next step with it and move toward forming a nonprofit that aims to educate and encourage, but once again, I’m very hopeful that I will figure out a way to help other struggling people find each other.
Tell us more about why you decided to start a nonprofit. Do you have anything in the works?
The truth is that, over the past few years, I have found myself unable to sustain a go-into-the-office-every-day sort of existence. I’ve had to turn my attention to my mental health in ways that mean radically altering my life. But at my core, I love connecting with people, helping people, teaching people, etc. The reason I’d like to take the next step is that I find myself at a crossroads in my professional life, and I can’t think of anything I would rather do than to turn my passion for writing, teaching, and speaking into something that might (fingers crossed) grow into something bigger than just me writing my blog. I’d like to get others involved, and I’d like to expand the resources I offer, and starting something official seems like a good next step.
Why do you think knowing we’re not alone is so therapeutic?
When I taught high school English, I used to periodically ask the question, “If you could live forever, would you want to?” The first question was always, “Would my friends and family live forever too?” When I told them “no,” about 90% said they wouldn’t want to live forever. I suspect the other 10% would eventually regret it, too, because I think that human beings are “herd animals.” I can’t speak for others, but I know that I have battled a fierce loneliness my entire life, and I’ve always looked for ways to find out if others are thinking like I think or feeling like I feel. When I find someone who really understands my idiosyncrasies and oddities, it’s like getting a new lease on life. I don’t know exactly how it all works, but I think quite simply that our hard-wiring is for being in a group, and that requires not just physical presence but emotional, mental and even spiritual connection.
Your blog fulfills its mission: You do a tremendous job at helping people with mental illness—and their loved ones—feel less alone, and that’s because you’re candid. I know how hard it can be to be so open about something many people consider embarrassing or taboo. Did you make a conscious decision to be so transparent, and did it take a while to get to where you are now?
What a great question! I don’t remember making a conscious decision, but I spent over 30 years hiding my struggles from everyone. Those closest to me knew I had my quirks and anxieties, but we never talked about it, and I never pursued professional help. I guess eventually it sort of just burst out of me—first in the form of a self-published book and then in the form of the blog. It took so much energy to pretend that I just couldn’t (or maybe wouldn’t) do it anymore. I’d call it more an act of desperation than a conscious decision. But I wouldn’t go back to faking it for anything.
One of the things you’ve been candid about is self-harm—you’ve cut yourself at times. What would you tell someone who’s never done this and doesn’t understand why anyone ever would?
I could talk for a long time about this subject because it’s so misunderstood. I remember in the past, seeing students with the obvious scars from cutting themselves on their forearms. I didn’t understand it at all, even after I had been diagnosed with OCD and depression. Then…and I’m going to share something I’ve never shared openly…I had an experience that led me to understand self-harm. A family member and I had had a very rocky relationship for over a decade, and one day I decided to text him to see if we could try to talk things through. What came back was an onslaught of hatred unlike anything I’ve ever experienced. He accused me of faking my mental “issues,” said my wife and kids would be better without me, and told me he’d heard through the grapevine (despite living 1000 miles away) that the employer I had recently left due to depression was glad to finally be rid of me. At the time I had given up drinking, but that night I took it back up in earnest, and later that night, well past midnight, I sat there drunkenly feeling like every fear I had about myself and my worth had come true. It felt like this relative had spoken for everyone, and I wondered if what he had said was in fact true. There was no conscious decision to do this, but I was in so much emotional pain that I took out the pocket knife from my pocket and just started digging the blade into my arm. Rather than hurting, it sent a wave of relief coursing through me, and I kept going. Eventually, over half of my forearm looked like a rabid cat had decided my arm was the enemy. After I had done this once, it started to become a somewhat natural reaction to the emotional pain I felt, and I did it many more times (and I’m not saying I’ve done it for the last time either, if I’m being honest). Eventually, I came to find out that the reason people do this isn’t a cry for help, as so many assume. It’s actually basic chemistry: For some reason, when one is in intense psychic pain, physical pain actually releases chemicals in the brain that bring release. As I understand it, it’s sort of like a drug high in terms of how it relieves one’s brain. I’ve gotten so I can actually test how depressed I am by how appealing self-harm is. As I sit here now, it holds absolutely no appeal. I just think, “Ouch!” But when my brain gets turned upside down, so does the appeal of hurting myself.
As you might know, my blog is primarily about OCD because OCD is my primary diagnosis—so let me ask a few OCD-specific questions. How did you first realize you might have OCD? And once you were diagnosed, how did you go about treating it?
OCD is also my primary diagnosis. I wasn’t diagnosed until I was 25, but I remember symptoms from my earliest years of life. Growing up, I was just aware that I was more anxious that others, so I just thought of myself as anxious, not obsessive. Finally, in my 20’s someone mentioned that I should look into getting medication for my “anxiety,” and I reluctantly went to a psychiatrist. He diagnosed me within about 12 seconds with OCD. It was that obvious to him, and looking back, I can see why it would be so blatant to someone who knew what to look for. Like many, I was a reluctant patient for a while. I went on and off of meds, not to mention starting over and over with various doctors, for years. I resisted the idea of medicine and thought that eventually I would just figure out the magic cure. It took a breakdown that landed me in the hospital before I finally surrendered and starting working on my symptoms in earnest. Thus far, I have found medication quite helpful as well as mindfulness meditation, which, to me at least, seems very, very similar to exposure and response prevention therapy. Both involve accepting one’s situation just as it is, and that, oddly enough, is the key to a healthier view of the world you’re living in.
Can you tell us more about your obsessions and compulsions? Are there any that seemed more stubborn than others?
My obsessions and compulsions have gone through various phases. As a kid, I went through a couple of years of germophobia, washing my hands incessantly and so on. As an adolescent, my hyper-religious upbringing brought on a severe case of scrupulosity: I was convinced that every thought and action was somehow tainted, that I wasn’t really a Christian, so I would say the sinner’s prayer (asking Jesus to save me from my sins) literally countless times a day. I also had magic numbers to ward off the devil. Later in my teen years, my obsessions took on a sexual nature. I had been raised to remain a virgin till marriage, and like any other teenage boy, I put a very high value on sex. But I became convinced that I would be impotent once I could finally have sex. The incessant “checking” involved all sorts of things I won’t detail here, but I was never without the fear that the one thing in life I wanted most—sex—would be stolen from me by impotence. Finally, my obsessions have taken on the form of relationship OCD. Basically, I can’t quit evaluating or questioning my relationship with my wife. We’ve been married 13 years, but I still examine our relationship as if we are dating and thinking of marriage. It’s truly torture because I’m made and remade this decision so many times, and I’m committed to my wife and kids, so I know it’s a useless question. But it won’t stop hammering my brain. There’s never a moment I’m not evaluating and re-evaluating my relationship with my wife. If I’m with her, everything she says, does, wears, implies, etc. becomes part of this pile of evidence in my brain about the state of our relationship: Is it as good as it should be? What is my level of attraction to her at this moment? Am I in the right relationship? Even when we’re apart, I might look at others’ relationships and compare them to my own or look at the way some other woman does something and compare it to how Ann does the same thing. As you know, it’s torture. I’d give anything to make it stop; I know it’s illogical, but I can’t turn it off. Even in the middle of the night.
Your book, Compelled: A Memoir of OCD, Anxiety, Depression, Bi-Polar Disorder, and Faith…Sometimes, discusses your Christian upbringing and how it affected your mental health. Specifically, instead of your struggles being as symptoms of a mental illness, they were seen as spiritual failings, as a lack of faith. This is far too common in many faith communities. How did you finally break away from that and get the help you actually needed, beyond prayer?
Wow. This one is huge. What would I give to have the hours back that I spent praying or worrying that I was not in God’s will?! When someone gets cancer, we consider them crazy if they refuse treatment in favor of just trusting God. But with mental illness, we are still pretty far behind in this regard. Until people see mental illness as every bit as “real” as a broken leg, we won’t be able to fully solve this problem of people thinking prayer can heal your OCD. Our friend Chrissie Hodges, who works with mentally ill patients all day, said that almost to a person, people’s various mental instabilities have something to do with religion. I also recently heard a statistic that something like 45% of evangelical Christians think that mental illness can be cured through prayer alone. For me, I still live very deeply entrenched in a community/social circle of evangelical Christians. I have people tell me almost every day that they are praying for me. Within the mental health community (counselors, groups, doctors) I think religion should be pretty much off limits. I’m fine with people telling others that if they have a faith tradition that they find helpful, by all means embrace it. But to me, when someone pushes their religious ideas on you, it would be just like me telling you that you need to take the same medications I’m taking. Obviously, that’s ridiculous. But with religion, that’s what people do because they believe they’ve found “the answer.” Religion helps a lot of people, but they need to be extremely careful about how they share that with others, because religion has also probably done as much damage to people as any other entity in history other than maybe the abuse of sex. These days, I am very much of the belief that one should evaluate for him/herself what is helpful and go with that. Meditation helps me a lot. Certain medications have helped me a lot. Meeting with friends who just listen and don’t prescribe helps me a lot. Maybe prayer will help Bill and nature hikes will help Sally and yoga will help Susie. We need to encourage each other to keep taking the next step, but we shouldn’t tell them exactly what that step must be.
If you could share just one piece of advice with others with OCD, what would it be?
I would give them the same advice I give myself: give yourself grace; you are fighting a very hard battle. Don’t berate yourself for something you can’t control. All you can control is whether or not you keep trying new things to see what might help. Don’t expect to get a magic cure. Try to find things that will help you take a small step forward. For me, Mindfulness Meditation has been a helpful step. For you, maybe it will be smoking cigars (that’s another of mine too). But I don’t want to tell you what will help you. There’s a lot out there. Just try something. Determine what a reasonable time frame is and if it’s not working, find the next thing. And find friends! And when you find them, introduce them to me, because I need them too!
Alison Dotson 