MILES O’BRIEN: A diagnosis of a mental illness can be just as hard on family members as it is on a patient.
Today, Mark Lukach offers his Humble Opinion on the importance of allowing caretakers a voice in someone else’s care.
MARK LUKACH, Author, “My Lovely Wife in the Psych Ward”: At age 27, my wife, Giulia, suffered an unexpected psychotic break. It upended everything we thought we knew.
Over the following five years, she had two more breaks, all of which meant lengthy hospitalizations and even lengthier battles with depression.
My lovely wife, Giulia, has bipolar disorder, a diagnosis that has radically transformed her life. Wait. Let me rephrase that. It’s a diagnosis that has radically transformed our lives, an obvious, but important clarifier.
The caregiving experience of mental illness is an unsung narrative, and it’s too often that family members are left in the dark around treatment and recovery, either by doctors or by the patients themselves. The result can be an ugly game of tug-of-war over who gets to call the shots. It certainly was that way for us. Giulia wanted to have her say, and I wanted to have mine. She didn’t like the side effects of her medication. I rationalized that the side effects were better than the psychosis.
I scheduled us for yoga and painting class. Giulia stayed in bed all day. As the one living through the lens of suicidal depression, Giulia’s voice obviously mattered. It was her body and her mind. She was the one taking the pills. So her insistence that she had a say in her treatment was natural.
But that insistence often felt at the expense of my perspective, the caregiver, the one the doctors entrusted to get Giulia to appointments and make sure she was taking her pills each night.
I lived and breathed alongside Giulia’s depression, studying it for patterns and clues for what was working and what wasn’t. It wasn’t my diagnosis, but it consumed my life.
Giulia and I were working for the same goal, but, in opposition, deadlocked in an unspoken resentment over whose voice mattered more.
One day, she took herself off her most disliked pill, the one with the worst side effects. She didn’t ask anyone for permission to do it. I freaked out: How could she play her own doctor? Didn’t she know that this is how families lose, and mental illness wins?
It turns out the doctors agreed with her. She was ready to be done with that pill. But they also agreed with me. It was dangerous for Giulia to make her own medical decisions.
We were both right, and both wrong.
And this was our lightning rod moment, the epiphany that helped break the cycle of mental illness as a zero-sum game. We chose to redefine her illness as something we shared: ours, and not just hers. Not one voice over the other, but both voices, with equal weight and validity, even when in disagreement.
Bipolar disorder had been tearing us apart. But this subtle change of a pronoun from “hers” to “ours” transformed it into something that could bring us together.