Stigma, the self and OCD

When we analysed part of the results of my doctoral research, specifically the relationship between the feared self, or feared identity (the kind of person I would be afraid of becoming) and obsessive-compulsive disorder (OCD), one finding caught our attention: a large share of the volunteers mentioned the word “liar” as part of their feared identity. In other words, many of the volunteers (all of them people with the disorder) were afraid of becoming a dishonest person, someone who deceives others. Curious, isn’t it? Why? What could that feared identity possibly have to do with OCD? When we sat down to analyse and discuss those results, our view was that participants answered this way because most people with this disorder hide it. They hide it from their partners, their families, their friends, their colleagues… They hide. And when someone is as conditioned by something like OCD, and it unfortunately takes up such an important place in their life, they may well feel like a fraud in front of everyone else. “They don’t really know what I’m like; if they did, who knows how they’d react.” And when you feel that the people you love most don’t really know you, you feel far, very far away from them. And alone. Put yourself in that position: if I believe OCD is awakening my true self (say, OCD with sexual, aggressive or religious content) and I can’t tell anyone for fear of rejection, it’s no surprise that I might feel like a liar to the rest of the world. We don’t even need such striking content: the mere fact of having the disorder leads many patients to hide it, for fear of being seen as crazy, unhinged or weird. In the end, it all comes down to the same thing: hiding for fear of rejection.

That’s one side of it. Another finding that caught our attention was that a very significant number of volunteers also included the word “selfish” in their feared identity; in other words, many of them were especially afraid of becoming selfish people. One possible explanation is that a person with this disorder becomes so focused on their problem, so overwhelmed by it, that everything revolves around themselves and their disorder. And they notice it. Hence their particular fear (above the fear of becoming a bad person, an aggressive one…) of becoming selfish, self-centred people.

Although we are making progress little by little, the truth is that there’s still a long way to go. You don’t need many conversations out in the street to realise there is still a great deal of prejudice around these issues. People with depression are weak; people with schizophrenia are mad; people with anorexia just want attention; addicts are addicts because they want to be; people who binge can’t control themselves; a woman who doesn’t have orgasms is frigid; a man who struggles to get an erection isn’t much of a man; people who see a psychologist can’t manage their own lives… And an endless list of other nonsense you hear far more often than you’d expect in the already fairly advanced year of 2021. Comments that often come from intelligent, cultured people, lucky enough to have been able to grow personally and professionally. It makes no difference: prejudice is prejudice. That’s why, when this topic comes up in therapy and a patient asks for my opinion, I always tell them it’s good to find, if possible, one or more people they can open up to and tell what’s going on, but to be selective and make very sure that the people they choose are open-minded, reasonably empathetic and close to them. And of course I always offer to act as a go-between and explain whatever needs explaining to whoever needs it. Telling a patient with a particular disorder (especially certain kinds of disorder) that they can shout it from the rooftops, that the world is ready these days and all that, would in my view be unrealistic and very risky. And let’s remember the point is to ask for support, not to add another problem.

Back to the relationship between stigma and OCD: research on OCD and stigma (Glazier, Wetterneck, Singh and Williams, 2015; Williams, Powers and Foa, 2012; Marques, LeBlanc, Weingarden, Timpano, Jenike and Wilhelm, 2010) has shown that the number one reason for not seeking help for OCD is “being ashamed of it”, and worse still, according to these studies, this reason has become increasingly common over the years. As you might expect, people whose obsessions have moral, sexual or aggressive content seem to be the most afraid of stigma and, consequently, the ones who take longest to ask for help.

If further studies confirmed the conclusions I’ve shared here about the self, stigma and OCD, it would be one more sign that our society needs a nudge (or several). If I’m terrified of telling people I have OCD, whether because of its content or simply because I have a disorder, and that makes me see myself as a liar, then the failure lies with the society we live in, not with the patient. And by hiding it, the chances of getting help go down, because even when they come to therapy, many have to manage on their own because they don’t want to involve the people closest to them. The same goes for the perception of selfishness I mentioned, which also makes me feel guilty. Nobody chooses to develop OCD (or any other disorder); it isn’t a choice. If it happens to me, I do whatever I can to fight the battle. If I become obsessed with it, it isn’t a whim; it’s that I don’t know how to do it any other way, it’s too big for me and I’m doing what I can. It isn’t selfishness, it’s survival.

In any case, the good news is that I’ve seen time and again that love can overcome stigma in the vast majority of cases. When we love someone, most of the time we’ll do whatever it takes to understand their situation so we can help them. The drive that love and affection for someone give us (and the patience we find thanks to them), together with a good explanation of what is happening, why it happens and what needs to be done to get better, are in my view the best weapons we have against stigma (whether in OCD or anything else) at an individual level, on a small scale. On a large scale… adding a mental health subject to the school curriculum would be a good option. After all, emotional intelligence and maths are equally necessary to make your way in this life…