I’ve read summaries of research on stigma-busting that lay it on the line.  Publishing facts about mental illness, as for example, how treatment helps people live successfully, does not assist in alleviating stigma. Highlighting the stories of people with mental illness who have achieved significant accomplishment, does not curb stigma either. What does work is for ordinary people to get to know ordinary people with mental illness personally! For stigma-busting and awareness and acceptance of mental illness to happen, individuals with mental illness need to be able to safely self-disclose or identify that they have received mental health treatment. Both peoples need to get acquainted and know each other. Nothing breaks down barriers like good communication. Acceptance and trust can be built up by direct experience of the other. But someone has to take the first step. Will it be you?  Should it be?

I want to talk about the role of self-disclosure in advocating for people with mental illness. I am hoping to reach out to you especially if you have a mental illness yourself or are related to someone who lives with mental illness.  A majority of people with mental illness – three out of four in one study – report that they have experienced stigma. Stigma can be seen as  a mark of disgrace, one that sets a person apart, or more harshly as a degrading and debasing social stereotype that discredits a person or group  because of an attribute ( e.g., mental  illness, or deformity, skin color, nationality, religion, etc).  In coping with the stigma, the affected person may turn it on themselves and internalize the stigma. This perceived or internalized stigma is very destructive whether or not actual discrimination occurs.

Self-stigma can perversely define what we think of ourselves and our illness and whether or not we get treatment.  Stigma, in shaping what we do with and about mental illness, shapes our future. Do we give recovery a chance as it applies, to our own life?  Do we strive to get better, and enter recovery? Or do we believe we are what the stigma and stereotypes suggest?

Self-disclosure, or “telling”, is one of the most powerful actions we can take to combat societal and self-stigmas. This entry centers on the issues related to self-disclosure. In a few weeks, I will have a second essay devoted to the stigmas themselves that are attached to mental illness.

So let’s explore what self-disclosure of mental illness involves as a decision. I will interweave some of my thoughts and experiences with guidance from Self-Disclosure and Its Impact on Individuals Who Receive Mental Health Services, a 2008 monograph published by SAMHSA( Substance Abuse and Mental Health Services Administration , U.S. Department of Health and Human Services)

I started to “out” my illness in the early 1990’s to a limited degree, first with those I worked and worshipped with. I remember well when I first went public and identified as a person with a mental illness and as a person with a family members also affected. It was 1992 and I was attending my first  AMI meeting (NAMI was then named The Alliance for The Mentally Ill). I walked into the community meeting room very slowly for I was nervous and anxious. Nervous because I was entering an organization I had previously and cautiously admired from afar, and anxious because it would be apparent to everyone that I had “IT”, a brain disorder called mental illness. You could tell by looking at me, and especially if you talked to me.

But with the advent of two terms as President of the local NAMI Affiliate in 1998 and 1999, my being “out” was much more public. In my From the President’s Desk articles published in the affiliate’s monthly newsletter, The Pioneer, I often wrote of personal and family struggles with mental illness. I had decided to write about these difficulties to bring issues out in the open that were common to many families.

The Pioneer had a large circulation. I knew that readers of my column could misunderstand and second-guess me. I felt exposed. But I was exposing to a relatively safe readership, the members and friends of AMI. Some readers would rightfully disagree with the positions I might take in my Pioneer articles. However, I knew that people with mental illness and their families had to speak up to promote a positive image of daily life with mental illness and also to advocate. I understood that it was important to self-disclose—to tell our stories—so the stigma that accompanies mental illness would be challenged.

Self-disclosing is a complex and personal issue that individuals must address when feeling strong and confident to do so.  Again, the most effective way of countering stigma and discrimination is through interpersonal contact. We are encouraged to share our experiences and our stories of living with mental illness in ourselves or through a family member as best we can.

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From the SAMHA report Self-Disclosure and Its Impact on Individuals Who Receive Mental Health Services (linked above) here are:

Tips that may be helpful to you

• It is a good idea to disclose to someone you trust who is tolerant and understanding.
• Timing has to be right and only you can determine when it feels right to self-disclose.
• Educate yourself about your mental illness and be ready for questions and concerns from those you inform.
• Consider role-playing what you will say before you actually have the conversation; know how you will handle any negative responses.
• If you are disclosing to your employer, the decision to disclose may wait until you feel comfortable in the workplace or until a reasonable accommodation becomes necessary.
• Remember you are in control of how much you disclose; don’t let anyone manipulate you into sharing more than you feel comfortable sharing.
• Often telling your story is especially rewarding and liberating.
• Telling can promote confidence and a discovery of yourself while acting as living testimony against stigma and discrimination.
• Sharing your own experiences may offer someone else hope that they too can recover!

 

Benefits – and some costs – associated with deciding to self-disclose

When you self-disclose, you may enjoy:

• Not having to worry about hiding experiences with mental illness and being more open about day to day affairs
• Finding others who express approval, including those with similar experiences
• Finding someone who can provide assistance in the future
• Promoting a sense of personal power and acting as a living testimony against stigma and discrimination.

When you self-disclose, these are factors can be costly:

• Encountering disapproval of mental illness or of your “telling”, including risks of social ostracism and gossip
• Being discriminated against in employment, housing and other opportunities
• Having increased anxiety due to perceptions that people are thinking about you
• Thinking that future relapses may be more stressful because others will be “watching”
• Experiencing anger from family members and others because you self-disclosed.

 

Self-enclosure in employment is serious business. Your job and livelihood can be on the line and perhaps your self-regard as well. Below are suggestions from the reference I have been using. I urge readers to seek out more information on self-disclosure in employment and the Americans with Disabilities Act of 1990 (ADA) before disclosing a mental illness diagnosis at your place of work.

Personal Considerations:

• How well do you feel you can handle prejudice and discrimination?
• Prior experience or discrimination that you or colleague experienced
• Your sense of self
• Your employment history
• How well you feel you can handle maintaining a secret and perhaps having to lie to do so
• Sense of disability pride or identity
• Other identity issues —including race, age, culture, and gender

Considerations Involving a Potential or Actual Employer:

• Type of business (e.g. whether prejudice is more or less likely)
• Size of employer( e.g. large company vs. small mom and pop business)
• Whether there are other persons with disabilities employed there
• Whether it appears the employer has adequately accommodated persons with other disabilities.
• Do staff or supervisors make positive or negative comment about people with disabilities, including those with psychiatric disabilities?
• How competitive the employment situation is
• How competitive the profession is
• How much expertise you bring to a particular job
• Whether particular accommodation request will be seen as problematic or matter of fact
• Whether staff and supervisor seem to be friendly to one another and to you

 

Societal Issues

At the time you are considering disclosure:

• Has there been anything in the news or media that might result in a period of increased prejudice?
• Has there been anything in the news or arts that might result in a period of decreased prejudice, for example, the movie <LINK>A Beautiful Mind or a famous person disclosing a psychiatric disability?

 

More good links to help with this decision

Disclosing Your Disability to an Employer (Boston University Center for Psychiatric Research)
Judge David L. Bazelon Certer for Mental Health Law ( “…to protect and advance the rights of adults and children who have mental disabilities”)

 

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In conclusion, I agree with Lydia Lewis,  one of the SAMHSA monographs’ contributors and a past president of the Depression and Bipolar Support Alliance who said, regarding self-disclosure:

“I think it is wonderful, but I would encourage people to self-disclose with caution. To self-disclose whenever possible, but not if it puts one at risk. I would say take the temperature of the person or the company that one is disclosing to and adapt the way you do it (self-disclose) to that temperature.”

Also from the report:

“Self-disclosure had a most positive impact on my life. Through self-disclosure, I have accepted that something had changed and that I was different. It was too difficult and painful to deny what was happening to me. Therefore, I chose to be very honest with others and myself about what I was going through. I think self-disclosing my story helps other people feel comfortable. Honestly, I believe that I have recovered, at least to a point where I can participate in life again.”

“Self-disclosure has to be an individual’s choice. It is different for everyone. You have to look at the pros and cons. Mine was more spiritual. I feel responsible to tell people who are going through something similar to what I have been through that I survived self-disclosure, and it has been healing for me. My suggestion would be to make sure you feel safe when you self-disclose.”