It's December 2010 and I wanted to revisist the topic of disclosure: who do you tell about your illness and what the response has been. Do you recommend telling people in certain situations or not others? Do you refrain from telling at all? I'd love to hear your comments.
When I was first diagnosed, I was in such bad shape that it didn't make any difference to me one way or the other. It just seemed a curiosity. Like something happening to someone else on some other planet. Back then, I didn't even know what schizophrenia was...beyond "really and truly crazy." I did spend a lot of time on the internet trying to find info, but there wasn't a whole lot available in 1995, believe it or not. I did tell my family because I thought that they, too, would want information. Nope. They didn't. At the time, it hurt my feelings that they didn't seem to care. But I think now it was denial, because they said things like, "How dare your doctor tell you something like that." And, "Surely there has been a mistake, you've been so 'normal' all your life." Obviously they had no idea what had been going on in my head all those years. It seemed, too, like they wanted to hide the diagnosis from themselves as well as from others. Hide the trauma. Hide the guilt. Hide it all and maybe it would turn out to be a bad dream. My brother was even called in the middle of the night once to transport me from one psych ICU to another; the hospital for some reason did not think it necessary to call an ambulance to take me across town. He did it without comment. But his face looked worried.
About the only place where I saw anyone outside my family was the few weeks I managed to keep a job here and there (and even 2 yrs at one place till they fired me for disclosing) and at church. My eyes were swollen and red, I was always nauseated for either going on or off medication, and I didn't feel like talking. I assumed everyone could tell something was terribly wrong because I was feeling so bad. It turned out some could, some couldn't.
When I started recovering, even ever so slightly, I began to want to tell people. To let them know "where" I had been and why. I wanted to give an explanation for what I perceived to be my own weirdness. Kind of like letting people know I was mentally ill so they wouldn't think I was crazy! Usually, I found myself telling too much too fast. It all wanted to rush up from my gut like food gone bad and spill itself on the sidewalk. I learned that this kind of disclosure was not what people wanted to know, and as it turned out, not what I wanted them to know. After making full disclosure several times and having a negative outcome, I started only telling someone when the topic presented itself because of some other reason entirely. (One day a friend and I watched an obviously MI person talking to himself by the side of the road and she wondered what could be wrong. I explained that he most likely had schizophrenia and was talking back to the voices in his head or some other hallucination or delusion. And I talked like such an authority, I guess she realized something was going on she didn't know about. So I disclosed. And was glad. It was right to correct stigma, and it so happened that it deepened our friendship. Now we can talk about anything!)
I think you have to pick your battles. And I often disclose in order to correct stigma. Because I am recovered to such a point no one knows I have ever been sick. I can present myself as a "well person" who once suffered the ravages of schizophrenia and depression. I also disclose when someone I know has mental illness in her family and needs information and a listening ear. I can give them hope that recovery is possible and stress the importance and necessity of proper treatment.
Hello Christina, In my dealings it has been a two-edged sword. I disclosed at one job and all was beautiful. i left that job and went to another and disclosed and all went well for about 18 months and then the manager started treating me diferently. i eventually had a episode after i filed charges with the EEOC and they fired me. Charges are still pending and I recieve unemployment because they lied and it was proven. I have also found it hard to disclose to potential women interest but i am learning. Thanks for the thought provoking question.
It is interesting that this topic came up because I brought up this same topic in a support group that I facilitate. I shared with the group the consequences for sharing my diagnosis while looking for housing, and we looked at a case study where someone disclosed in the workplace.
From experience, I would not disclose while looking for housing because I do not know how familiar the landlord is with schizophrenia. In the past, my potential landlord did not understand that the illness is manageable and did not rent the place to me.
I also, would not disclose in the workplace unless I needed accommodations, yet I still would not entirely disclose my disability. However, in relationships it depends on my comfort level with the individual. The response I have received while dating is that my illness is not a concern as long as it is manageable. Also, when I disclose to my partner, the conversation turns into an educational talk where they ask me questions and I give an answer.
Overall, I would not disclose if I had doubts or was hesitant.
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I won the NAMI-Staten Island volunteer of the year award in 2004. I sent this news to the employee newsletter at work. Little did I know the editor would lift the contents of why I won the award from the article I sent him in the local newspaper. It stated I was honored because I was a peer support leader and did public speaking for NAMI and wrote about my recovery for Schizophrenia Digest. I could not hide from this accidental disclosure after it was published in the employee newsletter.
As a rule: I don't tell people. Google exists as a screening tool that employers and others use to find out information about you. So it's no secret.
Only when I first meet someone I don't tell them if at all.
Tuesday night I was a featured reader at Bluestockings Bookstore and read scenes from my memoir, Left of the Dial. I'm one of those people who was compelled to write a memoir about her recovery. Now I have a literary agent shopping the manuscript to editors so there's no turning back.
Disclosure is a topic I'm interested in for exactly this reason. I received positive praise when people heard I won the volunteer of the year award.
Only in 1992 when I was in the hospital two weeks and then returned to my job in an office it was like I was treated like a leper with spots all over my body.
The question I wonder about is the effect of any disclosure you've given to others. Did it change the relationship? How did you feel after you disclosed? Did the dynamic change?
Bluestockings Bookstore is an independent bookseller in New York City that is also an activist center. For that alone I figured the people in the audience would be receptive to me. One woman commented: Great Job! after I read. A couple of people laughed at funny parts of what I read.
I had a therapist who believed most people would respond favorably when my memoir is published and that a few lone people who I wouldn't suspect would turn away.
I realize the stigma is still in full bloom.
My contention is that to remain silent I would be complicit in perpetuating the stigma. You might not have the guts I have or the inclination to publish a memoir.
Yet I wonder: do you disclose? It begs the question of whether sometimes disclosure is necessary. Or is it?
Cheers,
Christina
Good Morning Christina, Yes this is a very interesting topic. One which affects us all at some point.
When I was diagnosed in 1979 I didn't have to dislose. Everyone knew. I come from a small town in the BC Interior and when the word got out - that was it. All my friends disowned me. My family was close but it was not the same, and now, 30 years later I struggle with relationships, both with my family, friends, and members of the opposite sex.
I will disclose to someone who asks me or someone who is a fellow patient and this does not affect me in any adverse way. I am quite comfortable being called someone who has schizophrenia but not " a schizophrenic " I think it's important to make that distinction.
The last few years I seem to have been wearing a big badge on my chest that says " I am such a wonderful schizophrenic" . Since winning the "Courage" award in 2005 and with the BCSS lectures and speeches I do, it seems that my identity is dependent on disclosure.
I would have to say, though, that I would not go out of my way to tell someone. Some things are best kept to yourself.
Peace
Don Fraser