Mental Illness Stigma: Why I Speak For Ben For Now

September 3, 2012 Randye Kaye

This is Ben's journey, too.

That's what I sometimes need to remind myself.

Mental Illness and Stigma

Sure, I have become the family spokesperson for our experience with mental illness, since writing a book and this blog about our journey "from chaos to hope" with schizophrenia. Still, when people ask me to come and speak, either in person or in the media, about the issues associated with our situation, they sometimes ask if Ben will come and speak too.

The answer is: No. Not yet, anyway. And I can only hope that Ben's decision is not only respected, but understood.

[caption id="attachment_1080" align="alignleft" width="134" caption="Recovery Mask by CF Edwards, displayed at CIT Intl"][/caption]

Although Ben has given me his blessing and support to share our story from my point of view, he is not yet ready to go public with his illness. Maybe Ben still lacks the insight to know he has schizophrenia (a mental condition called anosognosia); maybe, he fears what people will think of him if they know. And maybe it's a little bit of both.

I don't make it my job to "convince" Ben he even has schizophrenia; I learned to sidestep that battle a long time ago, and rely on our relationship and the family "rules" to make sure he takes his medications for schizophrenia. But, even if he were to someday say the words out loud - yes, I have schizophrenia and am in treatment - he may or may not want to say it as publicly as I have, in Ben Behind His Voices.

That is his choice. That is his journey. I can only take care of my part of it.

"Wanna Go On Dr. Drew?"

A few days ago, I get a call from the producers at the Dr. Drew

[caption id="attachment_1086" align="alignright" width="133" caption="Dr. Drew's Great Show on HLN TV"]Dr Drew[/caption]

show on HLN-TV. They book me on the show for that evening to discuss the issue of conservatorship and mental illness, sparked by a headline (it is Headline News TV, after all) about Britney Spears and the conservatorship her father has held for over four years. Does she want out? Should she? What will happen? Why have a conservatorship in the first place?

Since I currently am conservator for Ben, and a published author and all, they want my take on it. Yep, all booked, blogged, and tweeted - but then Hurricane Isaac comes along and blows that topic out of the current news. The mental illness topic gets tabled.

Understandable, certainly. So the issue, and the appearance, may have just been postponed. But now, with extra time to rethink, one Senior Producer wonders if Ben will come on too. "We won't embarrass him. Dr. Drew just wants to ask him what it's like living with a mental illness."

"Just"? That is no small request.

So, I ask Ben. I know what the answer will be, but you never know.

"No thanks, Mom", he says. And I think I know why. He isn't ready. He is where he is - and that place is not yet in public, except through his mother's story.

I've learned that having a mental illness in the family does not define us, or our love, or parenting. But Ben is not yet past thinking that having a mental illness defines who he is. And neither is much of the world.

Sure, brave celebrities who have emerged from the mental illness closet are making a difference. Richard Dreyfuss, Catherine Zeta-Jones, Patty Duke. Sure, there are finally heroic characters on TV who are diagnosed with mental illness, and either take meds (Homeland) and/or take clear measures (Perception) for recovery.

But they are not as young as Ben. And they are not Ben, who carefully chooses what he can disclose (e.g. "I go to AA", or "I take meds" or "I have a diagnosis of schizophrenia" - note the carefully chosen words) and to whom.

At Ben's place of employment, they do know - because he had a relapse last year - but they were open-minded enough to hold his job for him. But among friends, among potential relationships, in the world in general? He does not want to be judged, especially before people know him as a person first.

And so - no Dr. Drew for Ben, though I am thrilled they asked, and hope that I can still speak for both of - for all of us, the one in four families dealing with a major mental illness in a loved one.

Maybe someday Ben will join us, but not today. He has his hands full just staying courageously above water, at a place many others would pass off as merely "normal." To us, to Ben, normal is a miracle.

So he allows me to speak for him, but without current pictures, without his real first name, without his appearing alongside me. And I can only hope that my appearance, with Ben's support but not his public comment, will be enough to honor our story, and speak for so many families who have similar challenges.

That is his right. I try, every day, to do him justice by sharing our family message as the current spokesperson for us all.

I hope that's enough for Dr. Drew, Oprah, or anyone else who wants a real family story to tell it like it really was, is, and hopefully will be.

Without stigma. Through understanding. And maybe, someday, more people like Ben can and will share their challenges and courage, loud and proud. As proud as I am, as Ben's mother.

APA Reference
Kaye, R. (2012, September 3). Mental Illness Stigma: Why I Speak For Ben For Now, HealthyPlace. Retrieved on 2024, July 15 from

Author: Randye Kaye

Leave a reply