IE 11 is not supported. For an optimal experience visit our site on another browser.

Mental health needs to be discussed by families. Keeping illness secret can be dangerous.

I could have been spared years of grief and misdiagnoses if I had known to be alert to the risks I faced given a family history of bipolar disorder.
It’s essential that we have more open conversations about mental health with our loved ones.
It’s essential that we have more open conversations about mental health with our loved ones.Chelsea Stahl / NBC News; Getty Images

In 1983, I lost my mother to mental illness. During the preceding six months, I had watched as she slipped further into a world of her own making, almost taking me with her, until eventually she no longer thought I was her real daughter and discontinued our relationship.

I was 12 and had no idea about mental illnesses such as bipolar disorder or mania. We lived in the Bible Belt, where the world was divided into sin and not sin. My mother had become obsessed with the occult around three years earlier, and conspiracy theories slowly overtook her reality. Eventually, she came to believe that I was a satanic agent out to destroy her. It was our secret, our terrifying adventure, with every day bringing a new plot twist. Like that I was receiving coded directives from other witches and needed to record them for her.

Perhaps it is a fear of being seen as “broken” that keeps families from sharing stories about mental illness, a fear of contagion and judgment.

I continued to maintain good grades in school. I was still elected to the homecoming court. Outside Me looked perfectly normal. But Inside Me was beginning to lose touch with what was real. My mother rarely ate or slept while trying to figure out who was after her and why. She interrogated me until I made up answers. I stopped eating and sleeping, too.

Luckily, my mother decided she could not continue to live under such duress, or perhaps some echo of logic warned her that I could not withstand this situation much longer (by this point we both believed — thanks to her effective brainwashing — that the water towers in Texas really were spaceships to be launched at the appointed time). She sent me to live with my father in North Carolina. He scheduled an appointment for me to see a psychiatrist within the week.

But those sessions were only focused on calming my anxiety enough to get through the rest of the year. It took two decades of going to different therapists and trying various antidepressants to find a psychiatrist who properly diagnosed me as having Bipolar II disorder. I wanted to cry with relief because I got a diagnosis that finally made sense of that chaotic experience with my mother.

I grew up in a culture of silence when it came to mental illness. There were rumors that my grandfather had been institutionalized for a brief period after trying to burn down the house. My father knew that my mother took drugs, never realizing she was most likely self-medicating her own mania and depression. Without any conversation about these experiences, I was lost, unaware until much later that mental illness can run in families (although other factors, such as environment, play a role) and that I could have been spared years of grief and misdiagnoses if I had known to be alert to the right risk.

Image: Nancy Hightower
Nancy Hightower.April Obholz Bergeler

Perhaps it is a fear of being seen as “broken” that keeps families from sharing stories about mental illness, a fear of contagion and judgment. And many people can present a high-functioning outside self while an inside self is crumbling, allowing the truth to be suppressed.

But that’s why it’s so important that this dialogue become more normalized with friends and teachers, and especially among parents and siblings. We certainly don’t feel the same sense of shame when inheriting bad teeth or eyesight, so it’s essential that we have more open conversations about mental health as well — in families and schools and the workplace — until it, too, loses its stigma and instead becomes a regularly communicated part of the family medical history.

Unfortunately, the information I was given when I arrived as a pre-teen in North Carolina had nothing to do with health. Instead, my father described my mother’s behavior in spiritual terms: She was disobedient for leaving him and had suffered the consequences. Her experimentation with drugs and the multiple affairs she engaged in were symptoms of her living “in sin” and being consumed by “her own dark thinking.”

Meanwhile, he and the psychiatrist he had taken me to concentrated on getting me integrated into my new family, as my father had remarried within the first month of my arrival. No one realized the extent to which I was suffering from PTSD. Instead, the main focus of our sessions was how to live in harmony with a new stepmother and step-siblings. It was a survival tactic. Most families have a plan of escape in case of fire or a protocol if a member gets lost. How many have a plan for dealing with depression, anxiety or bipolar disorder?

The story shifted as I grew older. I told friends my mother was a “psycho” because I still didn’t haven’t a definition for what had happened. Some days she had been perfectly normal. She checked my homework and took me out for ice cream. Other days, she would ask where I was hiding the weapon to assassinate her. There was no easy way to tell that story, no quick synopsis. But growing up, I secretly wondered if I had an expiration date. Would I lose touch with reality like my mother did?

I experienced my first major depressive episode after graduating college. My friends knew something was off even though I showed up for work on time. I covered my arms in long sleeves because I was scratching them, deeply, in fitful rages. I would punch the wall, sometimes cracking the plaster. The rage I felt didn’t make sense given the lethargy I simultaneously battled. I wanted to sleep all day and experienced relentless insomnia every night.

When my friends started joking that I wouldn’t make it to 25, I knew I had to get professional help. I found a therapist who worked with me to acknowledge and resolve some of my PTSD, but she soon suspected that there was a genetic predisposition to my circular moods of high energy and crushing depression. She hinted that I might be bipolar without using that particular term, and suggested that I see a psychiatrist.

But every psychiatrist or doctor I went to continued to misdiagnose me as suffering only from depression. I didn’t hear voices or engage in dangerous activity, never experienced a full-blown mania that disconnected me from reality, or exhibited the other behaviors typically associated with being bipolar. There’s no blood test for bipolar disorder, no throat culture that can tell a doctor empirically what is going on. It is all based on narrative. And when you lack family history, that narrative is only half complete.

Because I was given only antidepressants, both my insomnia and sex drive increased to unthinkable levels. Terrified of turning into my mother, I didn’t drink or date. Instead, I finger painted the walls of my graduate office and, when we moved to a new space, strung up hundreds of Christmas lights. I brought in toys, more finger paints and coloring books. I wasn’t described as manic but “eccentric.”

It was only when a new therapist suggested I see a psychiatrist who specialized in bipolar disorders that I was correctly diagnosed as Bipolar II at 32. He listened to the story about my mother and how I couldn’t sleep and yet didn’t want to get out of bed. He explained those stretches I couldn’t sleep and got lost in Christmas lights were a symptom of hypomania, while he assessed that my mother had probably experienced a psychotic episode while in the severe manic state that Bipolar I patients can suffer.

The psychiatrist prescribed a mood stabilizer, and while it took a few months of trying different combinations of medications in small doses, we finally found a good dosage. I started sleeping a bit better. I was able to work on my dissertation. I stopped harming myself.

Medication is not cure all, just as getting a cavity filled is not the end to tooth care. One must still visit the dentist, floss and brush. To manage my bipolar disorder, I must go to therapy, exercise and make sure to get enough sleep. Maybe another important way to help reduce the stigma surrounding mental health is to frame this narrative as integral to supporting our overall health, rather than adjacent to it.

It’s also key to have safe people to confide in about my mental health without the fear of judgment. I wish I’d such mentors when I was younger, but this kind of information was scarce at the time. Now, we know more. Which is why I feel it’s so important to share that knowledge and spare others my tortuous path.

While more families are discussing this issue, many still spiritualize mental illness or see it as a weakness.

As a university instructor, I make sure to have a link to the counseling center on my course website, and I also give in-class reminders about self care as we approach mid and late semester, when stress can be the greatest. Students experience the perfect storm of nonstop stress, erratic sleep patterns and a never-ending news cycle that makes the calmest among us anxious. Even spring can affect people with depression and bipolar disorder.

It’s important that they know this, and get help without fear or reproach. Students need to hear that their mental health is important, and while more families are discussing this issue, many still spiritualize mental illness or see it as a weakness. Undoing that stigma comes from repeated conversations. It starts with one.