On my mind: Fighting stigma, building communitiy
By Bob Carolla
When I am speaking to groups, I often introduce myself by saying I have bipolar disorder and am a lawyer and that the latter carries the greater stigma. It’s a sure-fire laugh line. There’s also a grain of truth in it.
Fifty years ago, stigma surrounded bipolar disorder, which was considered “manic depressive insanity.” Sadly, today, it still touches mental illness, as well as HIV/AIDs, race, ethnicity and socioeconomic status. It’s important to remember we are not alone. We are part of a broader movement focused on changing popular culture.
The good news is that the way the public views bipolar disorder is changing, and for the better. We can see progress, when bipolar themes are woven into television shows like House and Broadway musicals like Next to Normal offering a good dose of humor. Next to Normal is controversial (its messages don’t necessarily frame bipolar as a medical illness or encourage treatment), but at least it has people talking about bipolar—and laughing, but not at our expense.
Today, the Internet is a leading source of health information (and misinformation) and has “democratized” mental illness. “Direct to consumer” (DTC) advertisements of medications on television and in print also have had an impact, informing people about an illness, symptoms and the potential side effects of drugs. Because of commercial marketing, some critics argue that bipolar is being over-diagnosed and is merely a “diagnosis du jour.” Frankly, I hate that term. It trivializes a life-threatening illness and represents one kind of stigma. Is there a cancer du jour?
Today, bipolar may come up in conversations at neighborhood barbecues as parents discuss their teenagers’ travails. High school students may think the diagnosis is no big deal, so long as it’s treated and symptoms don’t become “too bizarre.”
At my 25th college reunion, several classmates and I inevitably asked each other: “Who do you work for?” Few people know what NAMI stands for, so I usually have to answer using all eleven syllables of the National Alliance on Mental Illness, not ever knowing for sure how people will react to the “mental illness” part. It gets even more awkward if they ask, “How did you end up doing that?” Sometimes I cop out and answer that there’s a history of depression in my family.
At my reunion, I was more forthcoming. I simply stated, “I have bipolar disorder.”
“My brother does too,” one classmate chimed in.
“Hey, shake,” said another, extending his hand. “So do I.”
“Me too,” admitted a third.
Disclosure is liberating. By no longer internalizing stigma wrapped in a sense of shame, we gain self-confidence that can hasten recovery.
However, it’s still a hard, cold world out there. We have to be realistic and selective, particularly when it comes to employment.
For some reason, people in early stages of recovery who have been unemployed for a while often have a strong desire to disclose to prospective employers; their disclosure is probably an assertion of integrity in order to overcome stigma. “Keeping a secret” somehow feels “sneaky.” We want to purge feelings of shame and receive validation. Frankly, we should all get medals, but my advice is this: don’t look for them in job interviews. The workplace is also not the place to go for talk therapy. It’s not a good idea to reveal a history of bipolar to co-workers during lunch break. For reintegration, my advice to peers is to focus on establishing a record of valued performance during the first six to 12 months in a new job. Ask for accommodations only if needed.
Expansion of peer support is important because openness does empower recovery. In that regard, bp Magazine is an important vehicle for our movement. The magazine strengthens our community.
Staying connected, raising public awareness, and watching out for each other are all part of the fight against stigma. We’ve made progress, but let’s see where we are five years from now.
Bob Carolla is director of media relations for the National Alliance on Mental Illness (NAMI) and oversees its StigmaBusters program. He is a member of bp’ s editorial panel.