This week on #hcldr we are excited to have Karen Ranus, Executive Director of NAMI Austin with us. Karen is also one of the outstanding speakers this month at the 2018 What’s The Fix? Healthcare Conference live in Austin and online streaming this Thursday, May 17th. Please don’t miss Karen at #WTFix – it will be an exceptional and empathy-filled conference with powerful stories. Karen is part of a Mental Health panel talking about The Power of Community to Make Change – specifically, “It Takes a Village.” See the conference agenda. Along the special support of Dell Medical School, What’s The Fix is the rare event that truly matters. One note about What’s The Fix that makes it stand out: It’s free. Zero. No cost online or in person. Amazing, right? Changing healthcare, that’s how it’s done!
Working with Karen to create this week’s blog was my singular pleasure. I learned so much about her work for mental health in Austin and Travis County, where she spends tireless hours working with a cross-section of the community. I know you’ll enjoy and value her as much as I do. A bit about Karen to get us started:
Karen Ranus is the Executive Director of the Austin affiliate of the National Alliance on Mental Illness (NAMI Austin). She sits on the Children’s Mental Health Plan Leadership Team, the Board of Directors of the Mayor’s Health and Fitness Council, the Travis
County Behavioral Health & Judicial Advisory Committee, the Advisory Committee for the Center for Youth Mental Health at Dell Medical School, and is a member of the Steering Committee for The Austin State Hospital Brain Health System Redesign. She has been featured as a guest columnist on mental health issues in the Austin American-Statesman, Austin MD Magazine, The Daily Texan and is a frequent speaker in the community on a variety of mental health topics. As a mother of young adults living successfully (most days!) with mental illness, she is passionate about addressing the mental health myths that keep people from getting the help and support they need to live healthy and productive lives.
Changing The Mental Health Conversation
Today, it’s difficult to fathom as we walk through aisles of our favorite stores—shelves brimming with pink breast cancer awareness totes, shirts, phone cases, belts, hats, key chains and more—but there really was a time (not that long ago!), when people whispered about cancer. The “c” word was never discussed in polite conversations and always in hushed tones.
In his book, The Emperor of All Maladies: A Biography of Cancer, author Siddhartha Mukherjee shares a fascinating anecdote that illustrates the level of shame still associated with cancer as recently as the 1950s. A woman contacted The New York Times to place an ad for a breast cancer survivors group but she was informed, “We can’t place such an ad because it uses the words ‘breast’ and ‘cancer’” (double whammy!). They suggested she call it a support group for “diseases of the chest wall.”
For much of the 20th century, cancer was a word to be whispered, a topic avoided in polite conversation, its diagnosis a virtual death sentence. The stigma was such that in the 1950s, when a woman called The New York Times to place an advertisement for a breast cancer survivors group, she was greeted with a long pause. “We can’t place such an ad because it uses the words ‘breast’ and ‘cancer,’” she was told. “What if we call it ‘diseases of the chest wall’?”
The shame of cancer, rooted in fear and denial, diminished as newly developed research and medicine allowed health officials to shift the conversation, one in which the public came to understand that many cancers were indeed treatable if caught early enough.
Cancer was no longer an immediate death sentence, and education campaigns developed encouraging people to focus on early detection and treatment. The American Cancer Society created a legion of volunteers called the Women’s Field Army (kid you not) that were sent out into communities armed with facts to “wage war on cancer.”
Today’s “cancer” is brain-based biological disorders, mental illnesses (which actually have a higher prevalence rate than cancer, impacting one in five Americans). Like cancer, much of what keeps people from talking about mental illness is fear and denial. While not a death sentence, as cancer was in the early twentieth century, a mental illness diagnosis can feel like a death—a dying of hopes and dreams of a productive and happy life. And, certainly, left untreated, can be life-threatening (90% of suicides are caused by an untreated, undiagnosed or undertreated mental health issue).
What gives me hope and gets me excited is some of the research and science bubbling up all over the world. It’s exciting to see the potential for accurate diagnostic tools and more effective treatments which will increase the success we already see in treating complex brain health issues. Like cancer in the mid-twentieth century, today we are poised to end the shame associated with mental illness. Shifting the focus to early intervention and treatment creates the possibility that fewer people are receiving treatment at “stage 4” of their illnesses.
Campaigns to lessen the shame and stigma are abundant, but I still find that people don’t know how to talk about mental health. Because fear is involved, we use dismissive language—language that diminishes the real and often heartbreaking impact of these illnesses. We carelessly use words like crazy and nutjob and rarely use person-first language.
How often have you heard someone refer to an individual and say, “He’s bipolar or she’s schizophrenic?” But, we never do the same with other illnesses. You don’t hear “She’s cancer or he’s diabetes.” We refer to people as their mental illnesses as though they are stains on their character rather than the serious health issues they are.
Language matters and how we use that language in conversations that lend themselves to empathy and understanding matters. It’s not uncommon for someone to approach me after a presentation and say, “I’ve been worried about a friend (or family member). I know I need to say something, but I don’t know how to talk about this.” That interaction, and many like it, point to the need in our community for some guidance on how to have what can be an awkward, but important and life-saving, conversation. My favorite Brene Brown empathy video is one I am certain you’ll enjoy and value:
- Know the warning signs, but mostly trust your gut. If you got someone in your life that you know or love, you can usually tell when something is “off.” And, being in a funk for a few days is normal, but a doctor’s visit is a good idea when symptoms persist and impact someone’s daily functioning.
- Know your facts. We’re still immersed in fear and denial. So, hearing that mental health issues are common (1 in 5!) and treatable (with treatment success rates comparable to other health issues) can be comforting.
- Shut up and listen. No really. Active listening is a practice most of us don’t do well. We aren’t comfortable sitting with feelings of despair. Imagine the character Sadness as she sits with a despondent Bing Bong in Pixar’s “Inside Out”. Be Sadness, not Joy. Never underestimate the power of just being there with someone.
- Use “I” language. This doesn’t mean, “I think there’s something wrong with you.” Rather, “I care about you, and I’m concerned. I’ve noticed that….(fill in the blank).” Now that you’ve started the conversation, here’s where you can go back to “shut up and listen.”
- Know the resources. One someone has confided in you, it’s great to know where to reach out and if you don’t know the resources, offer some help in finding them. Nothing is more challenging than trying to sort through all the help options when you’re already struggling.
It seems trivial, I know. But, I do firmly believe that, like the American Cancer Society in the early twentieth century, we can form our own army, armed with facts and “wage a war” on the shame, fear, and denial that keeps 56% of adults from accessing the mental health treatment that could be both life-saving but also life-making.
As my favorite social scientist, Brene Brown, always says, “We are hard-wired for connection.” The biggest difference we can make in changing the mental health conversation is creating the space for the people in our lives (family, friends, colleagues, neighbors, strangers on the bus) to talk more openly and positively about a public health issue that impacts us all (if you’re not the 1 in 5, you probably know love or care about someone who is!).
We are excited to have you help with Changing The Mental Health Conversation. Please join us Tuesday, May 15, 2018, at 8:30 pm ET (for your local time click here) as we discuss the following topics:
- T1: How does shame drive your mental health conversations and perceptions?
- T2: What do you find most challenging about having mental health conversations? What makes it easier? Harder?
- T3: Why do you think our attachment to stigmatized language is so strong?
- T4: What mental health resources are still missing in your community and nationwide? Which resources are the most critical?
Access to Mental Health Care and Incarceration, Mental Health America. http://www.mentalhealthamerica.net/issues/access-mental-health-care-and-incarceration
Mental Health Channel. Videos & Stories. http://mentalhealthchannel.tv/
Mental Health Facts in America, NAMI National Alliance on Mental Illness. https://www.nami.org/NAMI/media/NAMI-Media/Infographics/GeneralMHFacts.pdf
NAMI National Alliance on Mental Illness Infographics and Fact Sheets. https://www.nami.org/learn-more/fact-sheet-library
6 Mental Health Organizations That Need (And Deserve) Your Support, Huffpost, Jul 20, 2017. https://www.huffingtonpost.com/dr-matt-goldenberg-do-/six-mental-health-organiz_b_11079360.html
Startling Facts About Teenagers And Mental Illness, Daily Infographic, Apr 29, 2017. http://www.dailyinfographic.com/startling-facts-about-teenagers-and-mental-illness
Tell Me About Bipolar Disorder, NAMI, Jan 30, 2015. Video. https://www.youtube.com/watch?v=XQ2PbPr2AH4
Tell Me About Schizophrenia, NAMI, Jan 30, 2015. Video. https://www.youtube.com/watch?v=tYiTznmuSu4
The State of Mental Health in America, Mental Health America, 2018. http://www.mentalhealthamerica.net/issues/state-mental-health-america#Key
The State of Mental Health in America, NAMI Illinois. https://namiillinois.org/the-state-of-mental-health-in-america/
What is Depression? NAMI, Aug 12, 2014. Video. https://www.youtube.com/watch?v=CTXkyFbGqEg
What is Mental Health Parity Infographic, NAMI National Alliance on Mental Illness, 2015. https://www.nami.org/NAMI/media/NAMI-Media/Infographics/MHParity10-23-15.pdf
Why Mental Health Awareness Could Save Lives, USC Suzanne Dworak-Peck School of Social Work, Oct 17, 2013. https://msw.usc.edu/mswusc-blog/why-mental-health-awareness-could-save-lives/
Photo Credit: @NAMIAustin