His wife is beautiful. She’s charming and fabulous and the envy of the PTA. “I don’t know how she does it,” echoes in her wake as she works full-time and manages the monthly bake sale and volunteers for the garden club and sends 28 homemade invitations to her little one’s perfectly planned and executed birthday parties.
Her husband is That Guy – the one everyone loves. The guy who, at 40, is in the best shape of his life. The guy who, after cashing out of the business that he and his buddy started in their college dorm room now teaches classes at a local college and writes a blog that all the students follow.
No one knew that life behind closed doors can sometimes be hard.
They didn’t know that his wife was diagnosed with a laundry list of DSM acronyms when she was 16 or that throughout her life she has searched for comfort and balance. That sometimes, neither was anywhere to be found.
They didn’t know that as hard as her life can be, she wouldn’t change it. That after years of heavy medication had succeeded at keeping her more dramatic sorties into the extremes of her existence in check, she found that some of her more fundamental attributes had disappeared along with them: her creativity, her yearning for beauty, her unique expressions of joy. They didn’t know how much she had wanted them back.
They didn’t know that if asked about a cure, she might say, “A cure may fix what’s ‘wrong,’ but what has always freaked me out about the idea of a cure is that there is no baseline me. Since no one can tease out the ‘disorder’ from the order that is me, I will just stay with what I’ve got.”
Her husband didn’t know.
He’d never asked. Having seen her struggles, it seemed obvious to him that if given a choice she would want things to be different.
There’s no one left who doesn’t know her story now.
Because one day, her husband, that guy whom everyone loves, couldn’t take it anymore. He needed a place to vent, to find community. He needed people to understand how much his wife was, as he saw it, suffering. He needed to get help for her, and for himself.
He logged onto his blog and wrote an open letter.
I love my wife so much. More than life itself. There is nothing I wouldn’t do for her.
But I am tired and lost.
I don’t know how to help her.
My wife deserves a cure.
Please help us.
Along with the letter, he posted a photo. One he’d taken of his wife when she was sobbing and raging and feeling desperately out of control. One that shows her with matted hair and a tear-streaked face wearing pants stained with menstrual blood.
It had been the lowest moment of her life. She’d never been more ashamed, more embarrassed, more remorseful. It was a moment she would do anything to forget.
But that’s exactly what he wanted them to see – that moment – so that they would understand how bad it gets.
When the post hit the Internet, comments came pouring in. Husbands in similar situations thanked him for telling their truth. They were oh so grateful to know that they weren’t alone.
Her mother called, screaming into the phone. “How could he do this to you?” she asked. “How could he betray your trust like this?”
“I guess he needed to feel less alone, mom,” she said.
“What about YOU?” her mom pleaded. “Did he think about how this would affect YOU?”
She had no answer. No one had asked her what she thought. Her own story wasn’t hers anymore.
“There are thousands of ways he could have found support,” her mom said. “He didn’t have to do this.”
She didn’t know what to say.
The post ran through the PTA like wildfire.
As soon as she hung up with her mom, the other calls came. They appreciated her help, but they had someone else who could run the bake sale. The garden club no longer needed her help next weekend, but thanks. Susie wouldn’t be able to make it to the birthday party.
Finally her boss called. She’d been relieved of her job.
The darkest, scariest, most intimate moment of her life has been documented and exposed.
She has no secrets now.
She has no privacy now.
Her peers – her kids’ friends’ parents, sneer at her with disgust.
“She had PERIOD BLOOD on her pants,” they stage whisper as they pass her on the school drop-off line.
That story isn’t real.
(The quote about rejecting a cure is.)
This is what I want to know: Are we okay with a husband taking a photo of his wife at the lowest moment of her life? Are we okay with him taking to the Internet to share his angst about this intensely private thing without knowing how she feels about it? Are we okay with him sharing the photo online, thereby not only jeopardizing her current job but making it pretty much impossible for her to get another one? Are we okay with him revealing to everyone who knows her that she couldn’t even take care of her most basic and private bodily functions? Are we okay with one solitary thing that happened in this scenario?
If the answer to any of those — any single one of those — is no, then I ask these …
Why are we okay with a parent taking a photo of their autistic child in the middle of a meltdown, their lowest moments? Why are we okay with sharing our children’s most private details without knowing how they feel about them? Why are we okay with jeopardizing our children’s prospects of getting or keeping a job someday? Why are we okay with talking about our children’s most basic and private bodily functions online?
There was a time that I didn’t get this.
A time when I shared too much.
Perhaps I still do.
But I’m learning.
So I ask not you, but all of us ..
Why are we okay with this?
The imaginary husband’s description of his wife’s experience is not meant in any way, shape, or form to serve as a representative description of life with mental illness. Rather, it is patterned after posts shared regularly by parents of autistic children.
While autism is not a mental illness, I have seen far greater harm come from loudly delineating the differences than I do in joining forces to fight the stigmas and attendant societal challenges that both communities face.
If you think this parallel fails because the wife has speech and the ability to read while many of the children about whom this type of information is routinely shared apparently do not, I ask you to read this. And then read it again.
Image is a graphic reading, “There is no mystical line where severity of condition (be it autism or otherwise) trumps the right to human dignity.”
Editor’s note: Thank you, from the bottom of my heart, to the Autistic friends who helped me to rewrite and refine this post and, far more importantly, who have taught me that protecting my child’s privacy and dignity is everything.