It’s easier for Brett to talk about his depressive episodes than it is for him to talk about his manic episodes. We agree to use a pseudonym, but fear still makes him hesitant to talk. He’s a new dad, gearing up to go back out into the job market, and he’s spent years in therapy learning to manage his mood; he wants to stand up against the stigma, but there’s so much to lose in doing so.
Depression, that’s something people understand — at least a little. Long before Brett was diagnosed with bipolar I disorder there was depression: crippling, heavy, befuddling.
“There were days when I had to crawl to go to the bathroom,” he says, “hoist myself up to the toilet and crawl back to the bed. Just no thought that there was anything worth living for. And even if there was something worth living for, I didn’t think I could have the energy or the wherewithal to do anything.”
He assumed he’d escape it one day by killing himself. The thought of his loving mother always stopped him.
But there was also the mania.
“The mania is just so the opposite of that,” he says. “Like, life is so good. Life is full of possibilities. I’m a genius. I’m hilarious. I’m sexy. I’m wonderful. I’m going to go start a business, write a book, travel around the world, have sex with all these girls, blow all my money because I’ll get so much more tomorrow, do all these drugs, drink all of this liquor, get in bar fights and nothing can hurt me. And life is wonderful. It is the best feeling. It feels like you have super powers.”
About seven years ago, Brett experienced his first psychosis.
“It was as crazy as anything as you’d see in any movie,” he says. “Me in my pajamas in the basement drawing symbols on a white board at 4 in the morning, convinced that it was a most powerful thing and a message for humanity that would affect everyone.”
Brett sighs heavily, like he’s just sat down after a long day on his feet, part relief, part exhaustion. This is the part that’s hard for him to talk about, but it’s an important moment. His girlfriend at the time insisted Brett get help. Strapped for cash, Brett turned to the graduate student therapists at CU Boulder’s Raimy Psychology Clinic.
It took two years of therapy at Raimy before Brett agreed to transfer to the Sutherland Bipolar Center, housed in CU’s psychology department, where he could receive specialized treatment for his bipolar disorder on a sliding scale. It is the only stand-alone bipolar treatment center in Colorado.
He felt “freedom” for the first time “to not have to lie about myself.”
“Because I lied to employers, girlfriends, family, friends, neighbors,” he says. “How many weeks I left work to go to the Sutherland Center and I just had to say nothing. ‘Oh, just gotta take care of something. Just got to run an errand.’ Very, very, close friends, I would not tell them. … I mean, I had a psychotic episode where I drew symbols on the wall at 4 in the morning. It took me a long time to admit that, and I still really struggle with saying that out loud, so that sense of freedom, of acceptance, of being in a room with people that have your same struggles was just so valuable.”
But now that valuable space is set to close in May due to insufficient funding, adding to what experts and journalists are calling a mental health care crisis in Colorado.
Over 17 years, the Sutherland Center has served more than 2,000 Coloradans like Brett affected by bipolar disorder, providing a range of services — in-depth diagnostic evaluation, psychotherapy (individual, family and group), medication management, lifestyle coaching and community education — regardless of a client’s ability to pay. The Center has also trained nearly 40 graduate student and post-doctoral therapists, and produced an eight-hour seminar series that has reached more than 1,000 people.
“We just need more spaces like that in America,” Brett says. “And Sutherland was the space for bipolar disorder as far as I know in Colorado and now there’s no space left.”
The cost of bipolar disorder
Colorado’s prevalence of mental health issues is among the highest in the nation while its access to mental health care is among the poorest, according to research by Mental Health America (MHA).
A 2019 report by MHA estimates that about 20% of the state’s adult population — about 832,000 people — lives with some kind of mental health condition, and nearly 450,000 of them aren’t being treated for that illness.
There’s a growing shortage of behavioral health workers across the country, according to the National Academy for State Health Policy, exacerbated by “too few people entering the profession, an aging workforce, overall lack of resources for behavioral health services, and comparatively low salaries.”
Research by the U.S. Department of Health and Human Services’ Bureau of Health Workforce found that half of Colorado’s population lives in areas without enough mental health care providers, with 49 of the state’s 64 counties lacking a single mental health inpatient bed as of 2017.
The problem is bad enough in Colorado that Gov. Jared Polis directed the state’s Department of Human Services to spearhead a Behavioral Health Task Force to “set the roadmap to improve the current behavioral health system in the state.” The goal is to draft a “blueprint” by early summer, and begin implementing recommendations by July 2020.
According to the National Institute of Mental Health, bipolar disorder affects more than 5.7 million adults (about 3% of the population) in the United States each year. While it’s tricky to find exact numbers about the prevalence of bipolar disorder in Boulder County, the Sutherland Center estimates around 8,300 people in the county are affected.
“Next to schizophrenia, bipolar disorder is the most expensive mental health illness to treat because it’s so complicated,” says Rachel Cruz, executive director of the Sutherland Foundation, the parent organization that has supplied the Sutherland Center with around 80% of its funding since the beginning. “There are a lot of comorbid diagnoses that come with [a bipolar diagnosis]. Substance abuse is huge.”
Because bipolar disorder can present itself along a spectrum, much like autism spectrum disorder, the cost of treating the disorder can vary widely. The presence of concurrent (also called comorbid) conditions such as anxiety or substance abuse, the coverage and deductibles of a person’s insurance policy, and the type of program needed to treat the disorder (in-patient or out-patient) can all affect the cost of treating bipolar disorder.
In 2018, a team of researchers led by Martin Cloutier published a comprehensive study on the societal costs of bipolar type I disorder in the United States. It was the first such study in two decades.
Their findings, published in the Journal of Affective Disorders, found that bipolar disorder type I alone cost the U.S. more than $202 billion in 2015, with a total cost of $81,559 per individual affected by the disorder. These figures do not take into account bipolar type II disorder.
Understanding bipolar disorder
The understanding of bipolar disorder can get muddied in colloquial conversation, with people offhandedly referring to erratic weather as “bipolar,” or deeming a friend’s run-of-the-mill moodiness “manic-depressive” (a term that has become outdated as mental illness classification systems have become more sophisticated).
“I think it gets diluted,” Natasha Hasen says of the word bipolar. Hasen is a sixth year doctoral candidate in clinical psychology at CU Boulder who has worked as a student therapist at the Sutherland Bipolar Center for three years.
“There are common misconceptions about bipolar disorder,” Hasen explains. “People often [use the word bipolar to] mean [something is] really quickly changing from two extremes or that it’s unreliable. Bipolar disorder isn’t like that at all. Bipolar disorder is more like a weather front that comes in rather than a lightning bolt out of the sky.”
Bipolar I disorder is typified by depressive episodes and manic episodes. People with bipolar II disorder also have depressive episodes, but their “up” periods are hypomanic, a more functional form of mania.
Sutherland Center director Alisha Brosse likes to use the imagery of building blocks to explain bipolar disorder. Mood episodes — manic, hypomanic or depressive — are the building blocks of a mood disorder like bipolar. A mood episode is a markedly altered change in mood that someone experiences at one particular time. Someone in a manic state may begin to express pressured speech that keeps anyone else in the room from getting a word in edgewise. A depressive episode may severely slow a person’s speech.
Each type of mood episode has a cluster of symptoms dealing with things like energy levels, sleep, appetite, cognitive processes like distractability or concentration or racing thoughts. These clusters of symptoms must persist together for at least four days to qualify as a hypomanic episode, at least a week (or requiring hospitalization) to qualify as a manic episode, and at least two weeks to qualify as a depressive episode.
A diagnosis on the bipolar spectrum takes into account someone’s entire lifetime of episodes. Someone who comes to a psychiatrist expressing symptoms of hypomania but who has previously experienced a full-blown manic episode will be diagnosed with bipolar I. Someone who expresses symptoms of a depressive episode but has never experienced mania or hypomania will be diagnosed as unipolar (i.e., depressed).
“I think of it as hierarchical,” Brosse says. “Once you go up a rung, you can’t come back unless it was a misdiagnosis,” Brosse says.
Bipolar disorder is often misdiagnosed, especially on initial presentation. Many patients only seek help during depressive episodes (because, as Brett says, mania can feel like a super power), leading to a misdiagnosis of major depressive disorder. The stimulants that are often prescribed for those suffering from depression can cause full-blown manic episodes in a person with bipolar disorder.
A 1994 survey taken by the National Depressive and Manic-Depressive Association, found that 69% of patients with bipolar disorder were misdiagnosed initially and more than one-third remained misdiagnosed for 10 years or more.
The future of the Sutherland Center
While Brosse knows there are other organizations in the community that can serve some of Sutherland’s clients, she believes there’s something “very impactful” about the specialized services Sutherland provides.
“[Clients] really benefit from having multiple services under one roof with a coordinated team,” she says. “We have a weekly team meeting where we’re talking about intakes and groups and we have two hours of group supervision where people are talking about their individual and family therapy cases. And so when somebody comes to group, if they’re also in individual therapy, whoever’s leading group actually does know quite a bit usually about what’s going on for them. And then their individual therapist knows what’s being covered in group and they run those groups.
“And so they can help their individual client take that information that was presented in group and actually apply it in their life. So the synergy of the different services that we offer is what I think will really be lost.”
For Bob Sutherland Jr., the end of the Center is the end of a project he helped launch 17 years ago to honor his father, who suffered from bipolar I disorder. Like Brett, Bob Sutherland Sr. was reluctant to share his diagnosis with even his closest friends.
“When he passed away, his condition of being bipolar was not known to anybody except really his family,” his son says. “It was 25 years ago and there was probably even more stigma around it then.”
While Sutherland Jr. will work with Rachel Cruz and Alisha Brosse over the next several weeks to determine if the Center can make cuts and administrative changes that can keep the Center going for awhile longer, Sutherland isn’t optimistic. The Sutherland Foundation, which handles fundraising that supports the Sutherland Bipolar Clinic, recently lost a large amount of funding from a long-time contributor, The Colorado Grand, a charity sports car racing event that his father was a foundational member of.
“Everybody wants to see it continue, but the phone hasn’t rang with a group of individuals who want to pay for it,” Sutherland says.
“You know, society wants to deal with mental illness after the problem, after somebody has ended up on the streets or in jail or lost their job, and then society figures that they have to deal with it because they have this mess on their hands,” Sutherland says. The Center was operating on around $100,000 a year, providing treatment to dozens of clients at a time, some of whom were unable to pay even the most modest sliding-scale fee of $20.
Brett was one of these clients. While he’s in a better place now, capable of paying for full-cost treatment elsewhere, he wonders what will happen to others once the Center closes.
“Struggling like this [with bipolar disorder]… it’s almost a job,” he says. “It’s almost like you have a pet lion in your corner. Sometimes the lion is a nice, pretty kitty, and sometimes she can leap up and bite your neck off. So you have to learn how to train it and you can’t just figure that out on your own. A lot of therapists just want to medicate the lion and make it go away. But you need classes to learn how to figure out how to do that, how to train and how to keep it from killing you. How to keep it from running your life.”