Why Be Open About Schizophrenia?

Let’s talk about the question I get quite often, via reader e-mails, keynote Q & A, or sometimes in the form of a critical tweet or two accusing me of “exploiting” my son Ben by being open about out family’s experience with his illness: schizophrenia.

Am I  “Exploiting” my Son by Sharing Our Family Experience with Mental Illness?

No. Because Ben has graciously allowed me to speak.

First of all,  Ben has given me permission to share our story, as long as I changed his first name, relay any messages he asks me to, but respect his privacy by not using adult photos or expecting him to go on the speaking circuit with me.  These things, I have gladly done.

While not willing to talk about schizophrenia (or even, frankly, agree that the diagnosis is correct), Ben does realize that by speaking (from my point of view as parent), we may be helping other families to cope, understand, and sometimes  come back together.  So this is something we have done, together, each in our own way.

Why be open about mental illness?

To reduce stigma by increasing understanding.

This video, produced for the “Stand Up for Mental Health” campaign at Healthy Place, explains how “through stories, we get the human face of any condition” and “fight for:

  • Respect
  • Advocacy, and
  • Equality”

Please share, and check out the other videos there, if you know someone who may need to feel less alone.

5 thoughts on “Why Be Open About Schizophrenia?

  1. Your book has helped me understands my sons Journey through schizoaffective disorder. Thank you. My son is not in recovery, refuses medication, and can be a danger to himself and others. I am grieving and we have little contact. I hope my sons finds his way to recovery. I want to accept “my new normal”. Right now I don’t even know what that is. I hate mental illness. I will continue to advocate for better treatment, more research, and forced medication when necessary. I am lost but your story give me hope. Thank you.

    1. Hi Kim – I am so glad the book has brought you some hope. It’s a start!
      I wish things were easier for your family right now – where you are is so tough. Even though you can be doing all the “right things” there is only so much we can control. But you know that. Have you been to a NAMI support or Family-to-Family meeting lately? You know from my book that the education and support made a big difference for us – but of course it does not cure. Wish it could For now, know that you are not alone, and that the resources in the book can provide some of what may help.

  2. BRAVO to you for speaking out Randye, we need you!! We need eachother. Since my son was diagnosed in late 2011 with schitzophenia I have been looking for information. I have to say your blog is one of the best!! People who say you are exploiting do not have any understanding of what families of those with mental illness go thru. With many, like you, the suffering drives you to do something, it is so horrific that you can only do something to help those who you know are suffering. So thank-you Randye!! And to those naysayers…well, I will keep my thoughts to myself on that!!

  3. Hi, Randye,

    My response to your question – “Am I ‘Exploiting’ my Son by Sharing Our Family Experience with Mental Illness?” – is a resounding “NO!” You are providing a service to those who suffer, not only from schizophrenia, but also from any of an array of mental illnesses. You are bringing an “in-the-closet” illness to the forefront and permitting the public to know that it is truly an illness, just as cancer, Alzheimer’s disease, diabetes, and heart disease are illnesses. None of those accepted illnesses elicits the same negative connotation that mental illness does. This must change. And it can only change by informing the public. Through your book, BEN BEHIND HIS VOICES, you are accomplishing your goal.

    I too am attempting to erase the stigma of an illness. My husband suffered a Traumatic Brain Injury in 2005. Because he looks and sounds different, people are sometimes visibly afraid of him. It breaks my heart. He still is the most intelligent man I know. Even though physically disabled, he returned to his laboratory at Columbia University a year after his trauma and continued his research, wrote grants, published scientific papers, and guided Ph.D. students.

    I’ve written David’s story, PRISONER WITHOUT BARS, which your agent is now considering. I would be proud to have my book sitting on the shelves next to yours.

    So to reiterate, you are NOT exploiting your son, but you are informing the public. I enjoyed your book very much and appreciated your honesty. Thank you for your work.

    To read a few anecdotal stories about my husband and our journey, you can visit my blog (address below). Once on the page, click on the Traumatic Brain Injury link under Categories.

    Donna O’Donnell Figurski

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