by Ellen Krantz, NAMI San Francisco

Nobody is cancer, or is a heart attack. That’s not to say when my symptoms are bad, my thoughts, feelings and actions are not drastically affected, because they are. But my illness is not my whole identity. I define recovery not by lack of symptoms but by continuing to live life more fully. What I call more fully now is very different than what it meant to me before. I had expected to continue working at a high-pressure, high-paying job. I just thought I’d buy another new car and continue to go on expensive vacations. Now, when I’ve been able to work, I have no need to make a lot of money. When I can’t work, I gain enormous satisfaction from volunteering. And I appreciate people more. I’m kinder and more giving. And sometimes that’s just in a small way—for example, I fully see and thank the man bagging my groceries—while most people don’t even acknowledge that he’s there.

It’s difficult for many people to understand the pain of having a mental illness since it’s not physical pain. Diseases like breast cancer aren’t any less devastating, but everywhere you look there are pink ribbons and fundraisers. At least when we see someone who has lost their hair, we know they have had chemo. How many people know the horrible side effects of psychotropic meds? My father had tardive dyskinesia, causing his tongue to protrude. What did people think?

We know society stigmatizes people with mental illness, and many of us have internalized that stigma to some degree. After 40 years of suffering from bipolar disorder and having had to get ECT numerous times, my father would only admit to “having some problems.” Denial can cost people who live with a mental illness their lives—it might have done that for me. And it took me years to really reduce my self-stigma. I remember the first time I went to my local pharmacy to get meds that are only prescribed for people with bipolar disorder. I was mortified and completely embarrassed because now the pharmacist would know. Now I really like my pharmacist and we are on a first-name basis!

And what about when people call us crazy? One night I was sitting in the ER waiting room with my friend who has bipolar disorder, as does her daughter. We were there because she had to have her daughter hospitalized. Since the hospital had to search for an open bed we knew it would be many hours before that would happen. My friend can’t skip her meds for even one night without getting horrendous withdrawal symptoms, so she took her pills and fell asleep. I stayed awake so she wouldn’t be alone in the waiting room and every so often I’d check on her daughter. The last thing any of us were was crazy.  Her daughter was scared and in enormous pain. My friend was brave and saving her daughter’s life. And I was being there for them.

Obviously our society should feel compassion for everyone who has a mental illness and it’s sad but if those of us who don’t fit the stereotype go public it will be more likely to reduce stigma. It makes it difficult for people to say it’s only “those” people and distance themselves. As it happens, neither my father nor I fit the stereotype. For one thing our symptoms started after we had already gotten an education, and in my case, had been working. He was in his first year of med school I had gotten a degree in engineering from Columbia and had worked for 15 years as a computer programmer. Becoming more and more public about my illness and helping to reduce stigma is my goal to live life even more fully in the future.

This story originally appeared in the fall 2012 edition of The Voice, NAMI’s quarterly newsletter directly mailed to past and present donors.