Interview With an Expert by Lived Experience

Q.    Which is worse for you, the depressions or hypomanias? Why?

A.    Depressions are infinitely worse. Antidepressant medications triggered my first diagnosable hypomania. My husband, siblings, and friends reported that I had a hair-trigger temper at that point—not my norm. I must admit that I was not aware of being reactive. I felt good, and I was beyond grateful to be out of depression. I imagine my hypomanic episodes were worse for my family than for me, but I know they were also relieved that I was not depressed. They’d take hypomania anytime over depression.

I should mention that I run a little bit “high” most of the time. I think this would be described as a hyperthymic temperament, rather than hypomania. In general, I don’t feel very different from everyone else in my high-powered family, at my competitive university, and at the driven corporations where I work. People have always told me things like, “You get twice as much done in a day as anyone I know.” I attributed that to high energy, focus, and ambition. It never really got in the way. These seem like personality traits to me, and they have given me a competitive edge. I wonder if my hyperthymic temperament is connected to my bipolar disorder. What do you think, Dr. Swartz? I bet you have an opinion on that!

Q.    Your question about the relationship between hyperthymic temperament and BD II is interesting, and we really don’t have a good answer. Although some people with BD II seem to have a hyperthymic baseline, others do not. But I really appreciate your underscoring that your high energy personality is different from the episodes of hypomania experienced while on antidepressant medications. Can you say more about the depressive episodes?

A.    My depressions, in contrast to hypomanias, are absolutely, horrifically debilitating. When my bipolar switch flips me into depression, my brain simply stops working. This is excruciating for someone like me who is used to being high powered. Here is a brief description of what it feels like to be depressed, taken from my autobiography, Brainstorm: From Broken to Blessed on the Bipolar Spectrum and the subsequent TEDx talk of the same name:

When most people hear or see someone who looks depressed, they think about emotion: “Oh they’re just sad. Let’s fix their sadness.” But that’s not how it is for me. When I am depressed, my brain simply stops working. It’s a physical thing. Here are a few examples of the impact. There are many more.

Simple, everyday conceptual tasks I’ve taken for granted are nearly impossible. One day it literally took me three full hours to unpack two bags of groceries. I get lost between putting away the tomatoes and shelving the cereal boxes. In constant confusion, I’m unable to sequence actions. I forget multiplication. This makes me miserable. I once got an 800 on my math SATs. Shopping malls and supermarkets are impossible; there are too many choices. How long can I stand in an aisle trying to choose between peanut butters? The large or the small? The organic or the nonorganic? The cheap or the higher priced? These decisions paralyze me. And the inability to make decisions floods me with anxiety and shame.

Getting dressed in the morning poses a similar challenge. What goes with what? How do I choose colors? If it’s cold enough outside to need socks and there are none in my drawer, I simply can’t go out. I stop doing laundry. It’s too overwhelming to go through the sequencing it takes to fold, sort, and put away clothes. In the office, the bedroom, and the kitchen, things pile up. It’s not that I don’t want to do dishes; I simply cannot do them. But I hate this mess. The chaos makes me crazy, and I am embarrassed to invite anyone over into this scene—even though I’m desperate for company and terrified to be alone with my brain.

Q.    That’s a very powerful description of depression. How long did it take for you to get diagnosed with bipolar II disorder?

A.    25 years. No kidding.

Q.    That’s a very long time! What were the consequences for you of not getting the right diagnosis?

A.    I had a series of debilitating, life-threatening, excruciating depressions including at least seven major bouts lasting on average nine months each. If you’ve never experienced a broken brain, I think it may be hard to imagine how brutal these times are. Relentless hell, minute by minute, hour by hour, day by day. My inner “demons” [were] regularly screaming at me that I was worthless, and my family would be better off if I were dead. Please note that this was never a message I got from my parents or anyone else in my life. To the contrary, I’d won awards and accolades. The source of the demon’s ferocity is a mystery to me. The love from my family and friends is what kept me on planet earth. And later, after my kids were born, I preferred a living hell to leaving them with a legacy of a mother who died by suicide. But believe me, I don’t judge anyone who makes that choice. I get it.

Given my broken brain as described above, I’m quite sure I would have been in the streets or worse were it not for the resources and love of family.

The wrong diagnosis—doctors thought I had major depressive disorder—also led to the wrong drugs. I was given antidepressant medications that seemed to work at first, but then made me much worse. More anxiety, more sleepless nights, more screaming demons. When I’d return to the psychiatrist who had the “mental model” that I was just depressed, he’d give me more antidepressants. Vicious cycle.

I think it’s important to note that my worst and longest depressions occurred when I was on a variety of SSRIs. When the fifth psychiatrist finally gave me my BD II diagnosis along with bipolar-specific medications, I returned to full health and vitality in three months. A miracle.

Q.    You chose to tell your story in your recently published autobiography, Brainstorm: From Broken to Blessed on the Bipolar Spectrum. What prompted you to write about your experiences with BD II?

A.    Thank you for asking that. Here’s the story as it unfolded. I was in therapy with my husband and a wonderful couples counselor. I had finally been diagnosed correctly, was on the right medications, and was graced with the miracle of my brain and life back intact.

Now my husband—who had been holding down the fort at home, covering for me in our consulting business, and caring for our 4-year-old twins for 18 months—needed support. And we needed to rebuild our relationship after the trauma of that year and a half. The counselor, who had a Ph.D. in psychology, asked me to tell my bipolar II story. After I did, her jaw dropped. She said, “You have to write this story. My colleagues don’t know about it. They don’t know that there is such a thing as bipolar with no mania.” I went home and had a 14 chapter outline in about three minutes.

I wrote the book over the course of six months and then waited another decade to publish it. I wanted my parents to be in the next world before publishing because it includes a lot of my mom’s story. And I wanted my kids to be old enough to give me permission to share part of their story. When COVID hit and so many were suffering from the pandemic-induced mental health tsunami, I knew it was time. Your endorsement, Dr. Swartz, calling the book “The Kay Jamison of bipolar II” was a huge encouragement. How did you know that that’s what I set out to do?

Q.    Your first-person account of living with BD II is a great resource for family members and the many individuals living with this illness. It helps to know you are not alone. What are the most important things you want people to know about BD II?

A.    I hope people take away these messages both from my book and this article in Psychiatric News:

• There is a bipolar spectrum—many types of bipolar beyond classic manic depression.

• There is bipolar disorder without mania.

• People with BD II are consistently misdiagnosed with major depression. This is dangerous! We are often given drugs that can make us worse.

• BD II is not a lesser form of BD I. Our depressions are equally bad, if not worse. Our suicide rates are the same.

Q.    Thank you so much for sharing your story and wisdom with us. ■