I’ve interviewed a lot of professionals and misophonia sufferers for this blog, but so far parents of children with misophonia have been reluctant to come forward and share their family experiences.
Now, I know why.
In response to a recent blog post on brain research, Bonnie, an Ohio mother who has a 13-year-old son with misophonia, wrote: “In addition to lack of a proper medical classification, we are dealing with the stigma of ‘misophonia’ or ‘4-s’ being put under the umbrella of ‘mental Illness.’ This may be a large part of why my son has been in denial and adamant about not wanting therapy to help cope.”
Bonnie noted that she blogs anonymously about being a miso mom because she wants to protect her “highly sensitive, highly intelligent” ninth grader (he’s skipped a grade) from potential peer fallout.
“Children don’t mean to be cruel, but if the kids in the neighborhood knew about his misophonia, they might make fun of him,” she said. “He’s self-conscious enough; the last thing he wants is to be considered mentally ill.”
And who can blame Bonnie’s son?
The way the media constantly links mental illness with violence, any young male who admits to liking Batman movies is immediately suspected of planning to buy an assault rifle at the closest deli and slaughtering the nearest audience of innocent popcorn munchers. One 60 Minutes segment I saw even seemed to portray schizophrenics as flesh-eating zombies standing on Every Street Corner, U.S.A.
Yet, the media hardly directs any attention at all to stories about people with emotional disabilities being evicted from their apartments for having therapy dogs that have been doctor-prescribed.
Which brings me to the greatest tragedy of all.
Over last few decades, I have seen the medical profession best equipped to treat the “mentally ill”-- psychiatry—reduced to the Peanut’s cartoon of Lucy dispensing psychotherapy from a lemonade stand at a reimbursement rate from our government and private health insurers of five cents per patient.
As a result, many psychiatrists have made a pact with the devil--Big Pharma-- and have turned their practices into drug dispensing factories. I’ve even read that some psychiatrists are essentially on board with denying health insurance coverage for “mental illnesses” (like ours) if there is no pharmaceutical solution tied to them.
This further diminishes an already scientifically suspect medical specialty’s credibility in the public eye, as well as within the medical community itself (my gynecologist thinks nothing of prescribing psychiatric meds, so I have to wonder if my psychiatrist offers yeast infection treatments).
Further, our political leaders are so clueless that they actually rise to their feet to applaud the police for shooting to death a woman who turns out to have been driving erratically because she was suffering from untreated post-partum depression.
And these are the people we are sending mental health advocacy emails to? Who are we kidding? We can’t “erase the stigma of mental illness,” because “stigma” and “mental illness” are now permanently intertwined in the public consciousness.
Miso mom Bonnie said her son has told no one about his condition and refuses to discuss it openly with either her or her husband, even though they want to help. He is a loner, she said, and is pretty secretive, anyway.
But, Bonnie said, her son has admitted that when he hears trigger sounds in the classroom, he sticks his fingers in his ears and cups his hands around them to make it seem as if he’s concentrating. He has apologized to his parents for his response to triggers, which he describes as an adrenaline rush.
“He knows he’s not crazy, yet it seems so crazy,” Bonnie said.
Bonnie and I agreed that what we need is a new healthcare ad firm to undo all the damage that the slogan “erase the stigma of mental illness” has done. I suggested that misophonia should be completely re-branded and hereafter named Wendy’s Disease (which is Latin for “too much awareness”).
Bonnie said she has identified a potential medical creative director in Elysa Marco, a cognitive and behavioral child neurologist at the University of California at San Francisco. Last year, Dr. Marco led a team of researchers studying brain functioning in people with Sensory Processing Disorder using advanced imaging technology known as DTI scans.
Bonnie spoke briefly to Dr. Marco, and told me that the researcher is on a mission to empirically attribute SPD, and offshoot disorders like ours, to brain biology (rather than self-inflicted freakishness as is commonly assumed).
If this is the case, health insurers will be forced to recognize us as a “legitimate” disorder and give us the same type of insurance reimbursement code that procedures like appendectomies and spacecraft injury surgery are now given.
Despite all the neuroscience hoopla, however, it appears there isn’t nearly enough government money to investigate all brain disorders, especially quiet ones like ours.
“I feel the best path right now is to shine a light on and support Dr. Marco’s research,” said Bonnie. “It’s a bit tricky and costly to conduct at more than one facility, but there is going to be a crowdfunding campaign that will kickoff in July/early August to raise money for the next phase of the project at UCSF. I have several ‘misophonia’ mothers that want to get involved.”
I, too, have some thoughts on the future of our disorder:
I think it would be great if one day our insights into sensory-emotion brain processing were so keen that there were legal Wendy’s Disease clinics on Every Street Corner, USA.
I think it would be great if there were a pop neuroscientist with a bestseller out called “My Brain’s Okay, You’re Brain’s Okay.”
And most importantly, I think it would be awesome if Bonnie and the other miso moms could come out of the closet and found and run a thriving nonprofit of which her son could be proud.
But what do I know? I’m mentally ill.