Disclosure: Is It a Do or a Don't?
Recently, I disclosed my illness by presenting the breakdown scene in my memoir to the members of my writing workshop. It was received warmly. I truly feel that if you’re at peace with what happened to you, and are comfortable in your skin, others will accept you.
I’m not saying dare to disclose at every opportunity. You get to decide whether you want to tell someone or not. It’s your right to quietly embrace the diagnosis, and be on your merry way. You also have the choice to robustly advocate for yourself and others. Either way is fine.
With the advent of better medications that allow us to return to life more fully than was possible decades ago, the issue of disclosure has become vital. We can be in relationships and travel and attend college and do things that other people who don’t have mental illnesses can do.
Right now, I don’t disclose at work because I’m interviewing for a promotion. I’m also the kind of person who likes to keep the details of her personal life private when I talk to co-workers. They know, for instance, that I write and lecture about “health and fitness,” but do not know I give In Our Own Voice presentations for NAMI. When I schedule the day off, I don’t reveal why I’m taking it, and if I leave work early to go to the psychiatrist, I feel that’s nobody’s business, either.
That said, I’m sure people Google me. I write this blog, I have an author web site, and I’m to be the Living Life columnist for Schizophrenia Digest next year. Does this sound like I’m talking out of two sides of my mouth? How, you may ask, can I do what I do and not suffer the repercussions of stigma?
Ah, the stigma is out there. I just choose not to let it affect me. When I decided I wanted to be an advocate, I understood quickly that sometimes I would have to stand alone in my convictions, and face opposition. I no longer fear being left alone, because I enjoy my own company.
Years ago I was rejected when I tried to reach out and make friends with the women on the Island where I lived, and they weren’t receptive. Over the years, and after moving to Brooklyn, I found people who accept me as I am, knowing that I have schizophrenia. Perhaps I have a tough skin. Or maybe I’m inoculated from the fear of rejections because most people don’t bat an eye when they find out.
A clue: nobody has to know you thought you were Jesus. You can decide whether you disclose in full or keep certain things private. To this day, I won’t reveal to others the painful and embarrassing moments.
Ah, romance The trickiest form of disclosure occurs when we want to get intimate with someone. I won’t deny the hurt and pain you could feel if someone rejects you because you have an illness. Yet I knew rejection from my ex-boyfriend because I didn’t feel comfortable being myself around him. He had expectations of me I couldn’t live up to. Yes, he, too, had schizophrenia. So, if you date someone with a mental illness, that doesn’t mean he or she is automatically kind and generous. That person has a personality, too.
So I feel the stigma compounds a person’s sensitivity, because just starting off in any relationship, even for two people without a mental illness, each person brings his insecurities and hopes to the table, and is in a vulnerable position. I cheer anyone who risks showing her true self to another person.
Thus, knowing when to disclose could be difficult. When it comes to dating, it really is premature to tell someone your diagnosis on the third date-or even the tenth. You may have gotten physical; that doesn’t mean you’re close. I would say: disclose maybe after 20 dates, or two months. If you’ve gone that distance, it’s probably a good time to test the waters. Some of you, though, may feel the need to disclose before you have sex with a person, and that’s your prerogative.
One place where it’s imperative to disclose is with your primary care doctor. This is because you need to give her a holistic picture of what’s going on. Telling her what psych meds you’re on is necessary, too.
Okay, I’ve talked about disclosure at work and in love. I’d like to close out this blog entry with some pointers:
1. Who says you have to tell the average Joe on the street? As long as you’re not in denial that you have schizophrenia, you can safely keep it to yourself.
2. If you suspect someone will use the information against you, don’t disclose.
3. If you have the urge to disclose your diagnosis, ask yourself why. Would it better serve you to talk about your experiences in a support group or by doing public speaking for an organization such as NAMI?
I’d love to hear from you about your experiences with disclosure and stigma. Do you have some pointers of your own? I look forward to starting a dialogue.
Christina Bruni wrote about schizophrenia for HealthCentral as a Patient Expert. She is a mental health activist and freelance journalist.