Stigma and silence

When I came to work at the UNC Eating Disorders Program, I was hired to coordinate CBT4BN, a clinical trial that provides no cost cognitive behavioral therapy for bulimia nervosa. I knew the project would be difficult. CBT4BN provides online therapy so I had to learn a lot about computers and fast! But the one part that I thought wouldn’t be difficult was recruiting patients for the study. Therapy at no cost! I had worked at another clinic doing intake assessments. Every day I talked to people who desperately wanted to get better but didn’t have the insurance or the money to pay for treatment. I assumed word would spread like wildfire that UNC was providing evidence-based treatment and you didn’t have to pay a dime for it.

Boy, was I wrong! And at first, I had the hardest time finding an explanation for it. We had no cost treatment! Why was it so hard to get the word out to those who were suffering from bulimia and desperately wanted to get better? I’ve thought about it a lot and I think I have a partial answer. It’s hard to build word of mouth about bulimia treatment even if it doesn’t cost anything. Very few feel comfortable chatting with their group of friends, posting a status update, or tweeting about the bulimia treatment group that they’ve just joined. Mental illness stigma–experience of the negative judgments that others make about mental illness–prevents people from talking openly. Stigma silences. It causes us to omit details because of a fear of other people’s judgment or ignorance.

When you sneak out of work rather than tell your boss you have to go see your therapist, that’s because of stigma. When you don’t tell your roommates or close friends about your mental illness or make excuses rather than tell someone that you’re in a therapy group on Tuesday night, that’s because of stigma. One of the cruel ironies of mental illness stigma is that many mental illnesses actually improve when you have someone else to talk to about them. Social support is critical and yet finding people who understand mental illnesses and can support without judgment can be hard.

I hope for a day when mental illness stigma is a thing of the past and I’m starting to see signs that people are talking more openly about their struggles. I’ll write more about that in an upcoming blog post. In the meantime, we’re hoping that CBT4BN can circumvent stigma. When your identity is hidden behind computer screen, it can be a lot easier to reveal who you are. You hear other group member’s stories that sound just like yours and you say “Me too” in surprise because you thought you were alone but now you realize you’re not.

By: Dr. Stephanie Zerwas