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‘They don’t realize that there is another side’

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Welcome to a new group of readers who found this blog after The Associated Press published a long story over the weekend on attempt survivors and the trend in speaking out. “We’re not that fragile,” one woman told the reporter. “We have to figure out how to talk about it, rather than avoiding it.”

The story has gone all over. It showed up on the sites of The Washington Post, The Huffington Post, NPR, The Wall Street Journal, Salon, and elsewhere. Responses so far have been wonderful and strong. “One myth that needs to be laid to rest: People do not attempt or commit suicide because they are cowards. They do it because they are hurting,” one woman commented on the AP’s Facebook page.

A note to the media: Interested in pursuing your own story on this, or including those with thoughts or actions of suicide when reporting on suicide? Let us know. We can talk about what is, as the AP story notes, a serious public health issue _ and we want to.

It’s a point that this week’s contributing writer, Kathlean Wolf, makes powerfully here:

I keep seeing this term on the Internet and hearing it on the radio during the
gun control debates: “mental health advocates.”

“Mental health advocates” are concerned when new gun control laws like the one in New York require them to give up patient information to the government. “Mental health advocates” are quick to point out that most people with mental illness are not violent. Bravo, mental health advocates! But I can’t help but wonder: Who are you? Who are these people supposedly speaking up for my needs, explaining the challenges I face to the world at large? Are they people who’ve had similar experiences, who share my point of view? Do they, like me, have a good job, a relatively stable life, wonderful friends and a great doctor they work with to manage their problems? Are they people who have dealt with depression, who know firsthand what it feels like?

No. I listen to the radio on my way to and from work; I read news online and occasionally watch television with my best friend; I hear expert after expert speak about people like me … in the third-person. “Those people.”

I’m one of those people. Not one of the violent ones. No, I’m just your average, everyday person, who happens to also have bipolar.

I also happen to be a lesbian. I am a “gay rights advocate.” I spend time speaking out, trying to change attitudes toward people like me. Most people who advocate for gay rights are gay people, “queers,” people who don’t fit the “normal” heterosexual model. Other advocates are frequently family members and friends of gay people, but by and large, gay people are the main force behind the gay rights movement. We speak for ourselves.

I can explain how normal and happy my life as a lesbian is. I can speak to the persecution in elementary school, the rejection by religious leaders, the way my family reacted when I told them and how supportive they have been. I can explain how it feels to decide to come out in one area of my life, but not another _ out to all my friends, hiding at work, guarding my Internet identity carefully. My straight friends believe what I tell them about being a lesbian. I am the expert, after all. I’ve spoken to the media, representing my community in the fight to oppose Amendment 3, a change to the Utah constitution that would have prevented not only gay marriage, but any recognition of rights similar to married couples. I’ve volunteered with the Utah Pride Center. By “coming out” to friends, family and the
media, I put a face to the name “lesbian” and help people to realize: We’re just like
everyone else.

When I deal with the part of my life that includes bipolar, there is no “mental health pride center” to go to. I have never spoken with lawmakers, never spoken to the director of a “mental health rights” organization. No one has asked for my opinion about what’s most important to me. If I go to a bipolar support group, the focus is not “How can we change public attitudes toward people with bipolar?” No, the focus is on coping with our illness. Those people speaking on my behalf? They are doctors. Psychiatrists, psychologists. They are researchers. In many cases, their qualifications to speak for me are the years they spent in school to get a medical degree or Ph.D. Occasionally, they are parents of children with mental illness. Their point of view includes one narrow aspect of my life: the part that is broken.

My father sent me a link to a New York Times article from 2011 about a woman with schizoaffective disorder who actually needed a high-profile career as a part of her mental health maintenance. “Her mind runs on high, and without fuel _ without work _ it seems to want to feed on itself,” the article says. With the intensity of her job burning off all that
mental energy, she’s found a perfect niche to foster success.

“‘It’s just embarrassing,” Dr. Stephen R. Marder, director of the psychosis
section at U.C.L.A.’s Semel Institute for Neuroscience and Human Behavior, told the Times. “For years, we as psychiatrists have been telling people with a diagnosis
what to expect; we’ve been telling them who they are, how to change their lives _ and it
was bad information.”

This doctor, many doctors, are so focused on what’s wrong, they don’t realize
that there is another side. Not only do they only see us when we’re down, they see much
more of the patients whose lives are more negatively impacted by mental illness. I only
see my doctor every three months or so, and since I began working with her four years
ago, I’ve had two brief visits to the hospital emergency room, both resolved within a few
hours. My doctor sees me for less than 12 hours in a year. Is my healthy, well-managed
life going to make the bigger impression on her, or will she be more impacted by the
patient who ends up in and out of the hospital every few weeks?

I live every day of my life with bipolar: I go to work, and I am bipolar. I raise my daughter, and I am bipolar. I go to a hockey game, and I am bipolar. I laugh, cheer, smile, make jokes, go on dates, build bookshelves, hang a bird feeder off my fire escape, go kayaking across the lake at sunrise; and I am bipolar. I miss a few too many hours of sleep, a pill ends up stuck in the bottom of my pill case and I don’t notice, I get suicidal or have a seizure; and I am bipolar. Which of these parts of my life does my doctor see? Does she know about the hockey game or the kayaking at sunrise? Does she know that my boss at work likes my conscientious work ethic? The friends, the dates, trips to the grocery store with my daughter, laughing and making silly jokes? Does she know that I enjoy woodcarving and decorative knotwork, that I like Stephen King novels, or that I participate in a poetry writer’s group? If she is asked about someone like me, what part of my life can she speak to? Only the part that happens when something goes wrong.

From the Utah Pride Center mission statement: “Utah Pride is a catalyst for building and celebrating the strength, equality, dignity and self-determination of the LGBTQ community throughout Utah.” As a lesbian in a strong GLBT community, I was filled with a sense of pride about my identity and my community. One hundred years ago, there was no “gay rights” movement. Gays were invisible; sometimes we were even considered to be mentally ill, institutionalized for life. In the social upheavals of the 1960s and 1970s, gay men and women came together and formed social groups dedicated to gaining acceptance and equality. Their rallying cry at newborn Pride Parades was “Out, Loud, and Proud!”

If people like me were speaking for ourselves about our mental illnesses, what would the conversation look like? If we came together in a Mental Pride Parade, what would we chant? I can’t say that I’m proud of having bipolar; I’d change that aspect of my life, if I could. But I am proud of the fact that I manage the illness well enough to have an otherwise rich and successful life. As a mental health advocate, that is the
perspective I have to offer.

If mental health advocates who are mentally ill did get together, would we be talking about how to manage our medications, how to cope with stigma and how awful it feels to have a perfectly good day turn into a miserable one for no other reason than a shift in brain chemistry? Absolutely. I do need validation once in a while about how hard this can be. But that is not the beginning and end of the conversation. If I only focused on the hard times, it would be depressing, and a major focus of my life is avoiding things that depress me. I want to talk about what I’m doing right, the things that make my life a success.

From 2004 to 2008, I taught middle school. The stresses of teaching were so great that I had what doctors once termed a “nervous breakdown.” After a few years of recovery, I found a job in the construction field. I build giant commercial buildings, often working outside in all weather, wearing rugged clothing, working with power tools and heavy machinery. I’ve been in the field for two years, and I like my job. But there’s one benefit that stands above the rest: The lowered level of human interactions allows me to store up my emotional resources for family and friendships outside of work. I’m more mentally stable than I have been in decades.

If mental health advocates were actually people like me, people with mental illnesses, how could we change the way people with mental illnesses are viewed? Could we help researchers to find out what jobs tend to work well for people with bipolar, PTSD, obsessive-compulsive disorder or schizophrenia? Could we eliminate the stigma that people with mental illnesses are homeless, strange, abusive and violent? Could we teach our doctors that we are so much more than non-standard brain chemistry, that we are capable of making wise decisions about our own lives?

The biggest impact on the success of the gay rights movement was the idea of
“coming out.” Several times since the Newtown shootings, I have called up radio
shows to say, without shame, “I have a major mental illness,” and discussed the
realities of a normal, full life lived with bipolar. I’m a mental health advocate. Would
you like to know how a lesbian, mother, kayaker and construction worker, who happens
to have bipolar, keeps mentally healthy? Ask me.

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9 Comments Join the Conversation

  1. WOW, that was so interesting. I had to read it twice to be sure I absorbed it all. So well written and so good to hear an intelligent conversation from one who has suffered. I had never thought of from where the advocates got their incites. Now you’ve made me think and that’s a good thing.
    I too am gay,out to some but not to others.
    Thank you so much for sharing your thoughts.

    Reply

  2. It’s not helpful that people who aren’t suicidal dominate the discussions about it, so I think you’re doing a great thing.

    Reply

  3. As a psychiatric nurse, I’m SO happy to see this post (and this website). I try my best to be a mental health advocate, but I don’t have some of the mental health issues that my patients have so I don’t feel like I can speak for them in all areas. All I can do is try to get to know them and explain to the doctors what I feel they really need since so many psychiatrists today are only worried about getting people medicated and getting on to the next patient within five minutes. I’m so happy for you that you’re able to have a successful and happy life. My best friend also has bipolar disorder. She is an RN as well and struggles from time to time. Thank you for sharing your story! I hope you continue to be successful and happy!

    Reply

  4. There is a Mad Pride movement, and it’s been active since the 80s, but is still not all that well known outside of certain circles and cities. Every July is Mad Pride Month and there are events held around the world (do a Google search). However, they are not as organized as the gay pride movement (and definitely not as well-funded) so perhaps that’s why you’re not aware they exist.

    I self-identify as a mental health advocate (and a Mad Pride advocate), and am a person with lived experience of mental illness, but agree with this post that most advocates lack lived experience and that lack of insight can not only create a change in focus, sometimes it clashes outright with our real needs and values. Family caregivers often agitate against patient confidentiality and privacy, for example.

    I’ve been active in advocacy for years and have rarely seen equal representation, but I find more organizations are recognizing the value (and fairness) in having people with lived experience represent themselves, and are giving us a place at the table to share that voice. There’s much more need for improvement and stronger representation, but slowly it is changing.

    The Mad Pride movement sometimes clashes with more moderate advocates, however, as they tend to want to work outside the system instead of with it. A big challenge to organizing people with lived experience as a political group is simply getting us to agree on issues and realities in order to work toward a common goal. I personally think diversity is a good thing, but sometimes it’s a hindrance to have such strongly divergent worldviews, at least in organizing.

    Reply

    • I think Mad Pride on the surface is a fantastic idea. But factions of the movement advocate against the use of pharmaceuticals and misrepresent the benefits of ECT and completely distort the reality of the shortend lifespan of those with severe mental illness. It is not due to medication. It is due to comorbid conditions like drug, alcohol and tobacco addiction which remain staggeringly higher among those with serious mental illness. For example, smoking rates among persons with schizophrenia are estimated to be around 85% while they are below 20% in the general public. Also type 2 diabetes rates and obesity rates remain higher among persons with serious mental illnesses than the general public. Some of this can be blamed on medication side effects but some blame also falls on the disease process. But public health practitioners are working to create special programs or adapt programs to work with those with severe mental illnesses. Not taking medications is not the answer. It frightens me that these groups are advocating that.

      Reply

  5. I am a mental health advocate. I also have bipolar. This is not something I share. I have found working in public health that there is a real us and them mentality. And when I was open about my illness, colleagues got very twitchy about the us being infiltrated by the them. I’m not open any more.

    I find it’s difficult to be unable to openly draw on a vast amount of personal experience for the sake of keeping my private life private. I find myself spending vast amounts of time allowing for the fact that other just don’t “get it” when they never seem to allow for that fact themselves. People recognize that I am passionate about suicide prevention and assume I have lost someone to suicide. I let them make that assumption.

    I love this blog post! I think you are spot on about mental health professionals not seeing the patient but for the disease. We deserve better than that. We are more than just diagnoses and medications and prognoses. We lead full lives and have nothing to be ashamed of. Society should be ashamed of itself.

    Reply

  6. Ok so my question would be who is the advocate I talk to about how my son got taken away from me, with out a mental health Drs professional opinion. I am bipolar, medicated, and living a relatively normal life. Where is someone to protect woman like me, even crack heads and drug abusers have rights to their children. I don’t have enough as it is lets take away my only son… If gays and lesbians, and blacks, and every other minority group gets help with these things… But not us… They call us “crazy”, “moody”, “insane”, and so much more, well I wouldn’t be so crazy if they would let me have my son back. Ill be honest that is what makes me the most depressed is not having him. I would do anything to have my son. But there is no one to fight for me, or my rights for that matter.

    Reply

  7. I am thinking seriously of starting a Mad Pride chapter in Salt Lake. I have a Neurodevelopmental Thing,diagnosed at age 5 and survived several fairly awful episodes of misguided and stigmatizing “treatment”. My son has the same diagnosis also diagnosed at age 5. I am also a helping professional and in the process of completing my Masters in Mental Health counselling. Thanks for your post. I’d love to communicate with you about this if you like.

    Reply

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