Why is sharing our mental health story important?

By Marisa Lancione

About Marisa Lancione
Marisa Lancione is a mental health advocate who was diagnosed with Bipolar Disorder II 8 years ago. Despite being stable for the past 4 years, she still struggles to find balance in life while managing a mental illness. Marisa is a media relations professional and when she isn’t fighting stigma, she can usually be found reading, writing or tweeting.

Since I started to share my mental health story with the public, people keep telling me that I’m brave. As flattering as that is, I don’t consider myself brave because many before me, and many after me, will share stories that are more compelling, filled with more struggle and told much more eloquently than my own. But the reason I chose to start sharing my story is because I found strength in other people’s; they became a life raft that I clung to when I was in a bad spot, couldn’t figure out what was happening to me or just needed to feel like someone understood where I was coming from.

When I was first diagnosed with bipolar disorder, I had never heard of the illness and knew nothing about it. The psychiatrist explained it vaguely as having peaks and valleys in your moods that aren’t “typical.” He briefly described hypomania and depression, both of which I had already experienced, but he gave me no insight into how to manage these peaks and valleys or how my life could or would be forever impacted by this diagnosis. I left his office with a script for Lithium, another appointment to see if I had leveled out and a list of unanswered questions.

You’re probably saying to yourself, well maybe he was just a bad psychiatrist – and you’d be right. But frankly, I’ve never met a good one. To me, a good psychiatrist is sort of like Bigfoot or a UFO. People say they exist and have told me of their encounters with them, but I’ve still never seen one with my own eyes.

Psychiatrists have repeatedly discredited my lived-experience with depression, anxiety and bipolar disorder. One psychiatrist told me that I wasn’t really depressed because “real” depressed people didn’t shower or get out of bed. Another said that I was too calm to be experiencing panic attacks (oh, maybe I’ll just come in when I’m in the throes of a panic attack – would that prove that I’m having one?) And then there was the truly awful, which only happened about two years ago. He patronized me about pregnancy while on medication, despite my assurances that pregnancy wasn’t in the cards for a number of years. He also inferred that I shouldn’t actually have children because they could “get what I have.” (Didn’t you know that having a mental illness makes you a horrible monster who should be hidden from the world and we should be forced to become sterile? He would have fit in perfectly with the Victorian-era doctors).

So now, looking back on my psychiatrist’s lack of explanation, I’m not shocked about his unhelpfulness. But that day, I left his office completely baffled. So, like anything I don’t understand, I started to read about bipolar disorder. I armed myself with The Diagnostic and Statistical Manual of Mental Disorders (DSM). I started with the incomprehensible definition of bipolar disorder in the DSM, written in jargon by doctors for doctors. Unsatisfied with that I started to read psychology articles that explained how important sleep and exercise was or how eating a healthy diet was integral to managing your mood. Everything that I read also talked about how stress could trigger a “mood episode.” Although none of this talked about how to avoid stress in your day-to-day life, or how to speak with your spouse about your feelings or what to do if you can’t sleep.

I also read about how psychopharmaceuticals were typically marketed to women (Did you know Valium was referred to as “Mother’s little helper”?) and that the diagnostic categories in the DSM have a long history of being extremely gendered. (Did you know that the 19th-century diagnosis of hysteria, which was almost exclusively a female malady, actually comes from the Greek hysterikos for “suffering of the womb”?)

As interesting as all of this is, none of it helped me understand myself in relationship to my illness. Nothing talked about what it was like to try endless medications and have none of them work for longer than two years. They didn’t talk about how Lithium made eating dairy products unbearable or how it made me incredibly dizzy all of the time. It didn’t talk about how taking Seroquel would affect how and when I go to sleep or how crappy it is to get blood tests every couple of weeks. Or how expensive medications are. They didn’t talk about what it’s actually like to be on a psych ward or how no one can possibly understand why you’d consider suicide as a viable option. None of what I read described what I was going through.

The best thing I ever did was to leave the academic texts behind and I turned to memoirs written by people who live with mental illness. I don’t know what brought me to this place – maybe some vain hope that somewhere, someone else was experiencing what I was going through. And thankfully that’s exactly what I found.

These stories are told from the front lines of mental illness from a variety of perspectives; addressing gender, occupation, socioeconomics and race. The authors write candidly about suicide and self-harm, they detail the difficulties of maintaining relationships through the ups and downs of their illnesses, they explain uncomfortable side effects of psychopharmaceuticals (My memoir will be called: May cause excessive sweating and weight gain). They talk about the strange camaraderie that forms on a psych ward as you trade war stories of your worst panic attack, botched suicide attempts and which medication gave you the worst side effects.

These stories made me realize that It doesn’t really matter what the DSM or the psychology articles said about me, mental health and what I should be experiencing. What was important was my experience. That is the reality of the illness.

What these memoirs gave me that the academic articles never could was a sense of community. It didn’t matter that the authors had different experiences or diagnoses from my own because I could still see myself in them – they were still telling my story. They understood. Feeling understood, even if it’s by someone you’ve never met and will probably never meet, is sometimes enough to keep going when you’re feeling frustrated and fed-up with the system.

This is why sharing our stories about mental health is crucial. Our stories could save a life or at the very least give someone the hope to keep fighting.