Telling Others About Your Schizoaffective Disorder

Telling others about your schizoaffective disorder or schizophrenia can be tricky, often because of the stigma surrounding these illnesses (Telling Someone You Have a Mental Illness). Other people may have incorrect preconceived notions about these illnesses, such as the myth that a person with schizophrenia or schizoaffective disorder is violent. Here’s how I approach telling other people about my schizoaffective disorder.

Choose Who to Tell About Schizoaffective Disorder, Schizophrenia

First of all, I don’t tell everyone I know about my schizoaffective disorder. The people at work don’t know about it – unless they follow this blog. They know that I have an anxiety disorder, which is not as stigmatized as schizophrenia or schizoaffective disorder, although it is very painful as well.

The truth is that I haven’t had to tell someone about my schizoaffective disorder in a long time. I’ve been in a monogamous marriage for almost nine years, so I haven’t been dating, and my family and long-time friends already know. Unfortunately, my generalized anxiety disorder makes it hard for me to make new friends. But when I do need to fill someone in, I am matter-of-fact and explain how I keep my illness under control with medication, therapy, and my close-knit support network.

Decide When to Tell Someone You Experience Psychosis

I don’t remember just when I first told my husband about my schizoaffective disorder and my major breakthrough symptom -- that I sometimes hear voices. We were dating and I told him that I thought they were faeries when I first heard them -- so he refers to the voices as faeries. It doesn’t faze my husband that I hear voices. When I tell him they have returned, he just says, “Well, then, do what you know you have to do when they come on.”

I usually take a tranquilizer and put on relaxing music, like some of Tori Amos’ more recent music, or I watch a soothing movie like Yellow Submarine. My husband can’t understand why I find Yellow Submarine soothing. I think one of the reasons is that a lot of it is music. And there’s just something reassuring about the Beatles as a team, probably because I liked them a lot as a kid so they remind me of the safety of childhood.

After I’m more relaxed, my husband will ask me, “Are the faeries still talking to you?”

Sometimes he’ll ask me what they’re saying, or I’ll just tell him what they’re saying even if he doesn’t ask. I never used to tell people who know I hear voices what they were actually saying. They say things that don’t make sense, like “smoking is bad for your weekend.” I quit smoking almost five years ago. But I guess that’s entirely beside the point.

How to Tell Someone About Your Schizophrenia or Schizoaffective Disorder

Having that network of close people who know I have schizoaffective disorder and who know I hear voices is really helpful. I recommend telling only people with whom you want to have a close relationship or friendship and waiting until you’re already sort of close before you tell them. One person told me it was helpful that I told him while my manner was really calm and down to earth, and that he didn’t find out while I was in the throes of freaking out. (It’s worth mentioning that I never freaked out around him, though.) So I recommend making a plan when you’re going to tell someone about your illness. That way, the person won’t just find out because you’re having an episode, and the news will be part of a calm conversation and easier to hear and relate to.

I lost a friend after I told her about my psychotic episode. However, I’ve told a lot of people about my mental illness, and she’s the only friend have I lost. I wish you the same luck.

Photo by Elizabeth Caudy. Find Elizabeth on Twitter, Google+, Facebook, and her personal blog.