How ‘real people’ illuminate the torturous process of getting mental health care

Date:

by CHJ Fellow Christopher Snowbeck

Journalists talk about how our stories need “real people.”

We like how they avoid jargon, are typically straightforward with their motivations, and help humanize the issues we present to our audiences.

I’ve always given at least lip-service to this journalistic reflex, but I might not have fully embraced it before reporting our series on Minnesota’s mental health crisis.

Over nine months of work, I found the “real people” we interviewed brought an emotional depth that was essential for telling the fuller story. There came with a price, since the deeply personal nature of these interviews made it difficult for me, at times, to maintain composure.

But that’s only part of it.

While reporting the second story in our series — an article on the wonky topic of mental health parity laws — it was patient Rylie Perkins who forced me to see what I now regard as the true nature of the trouble with accessing mental health care in our country. To use a technical term: It’s mucky. By that I mean the problem has more dimensions than we typically want to tackle, in life as well as journalism.

Rylie’s story was more than just the tidy patient-versus-insurer anecdote that I initially thought we’d need. It showed the more difficult reality that access to care often is challenging for a whole bunch of reasons that I will explain shortly.

We launched our Star Tribune series in March 2023 with an article that analyzed a novel data set that illustrated how hospitals’ financial incentives shortchange mental health care. I drew on newly acquired fellowship skills plus tremendously generous assistance from my Star Tribune colleague MaryJo Webster and senior fellow Andrew Ba Tran of The Washington Post.

A later story in the series reflected the many anecdotes I’d been hearing from patients and caregivers about the apparent mismatch between supply and demand with mental health care.

Patient Leinani Watson provided the opening anecdote for this article, shining attention on how the gaps are hitting particularly hard for young people. I struggled speaking through tears during one interview, as Leinani described methods she’d learned via social media to harm herself.

Yet another story in the project focused on mental health parity laws. These statutes are critically important because they require health insurers to provide comparable coverage for both mental and physical health care needs.

To start this article, I found a patient in New York who was lead plaintiff in a lawsuit alleging noncompliance at a hugely influential Minnesota-based health insurer. I interviewed her shortly after I went through training at the Center for Health Journalism’s 2022 Data Fellowship, and figured her story would perfectly bookend our article on mental health parity.

But a few months later, one of my editors asked a question: Wasn’t there someone more local we could photograph? This could have set me off.

“We’ve got an anecdote already!” part of me wanted to exclaim. “This is coverage of mental health!  It’s tough to find any patient willing to talk and be photographed, let alone one whose story speaks directly to an amorphous topic like mental health parity!”

Luckily, I’m from Minnesota, where cultural courtesy prevented me from saying any of this. More importantly, I quickly realized my colleague’s question was the chance to make our story even better.

My editors had given me time to develop a deep list of sources for these stories, even though it meant I failed miserably with deadlines.

So, I said I’d look for a closer-to-home option.

In the end, we still featured the plaintiff in the story, but I also worked with a local clinic to connect with eating disorder patient, Rylie Perkins.

As she was making lasagna one evening and my colleague Richard Tsong-Taatarii took photos, I quizzed Rylie about her story. I’d already talked with her a few times at that point, but the conversation helped convince me that her experience was about much more than just a conflict with a health insurer.

Yes, she’d experienced a denial — as well as an appeal that’s a longer story than I could fit into in print. But there were other factors. Staffing problems contributed to Rylie’s long wait to get into a treatment program and complicated her search for a psychiatrist, as well.

Perhaps most importantly in terms of mental health parity, Rylie had earlier in her life experienced the relative abundance of services that our health care system makes available to young athletes under the heading of sports medicine. When Rylie was a softball pitcher in high school and college, she got speedy access to outpatient surgery to alleviate a recurring wrist injury.

The contrast certainly felt like a mental health parity issue, but did it amount to a parity law violation? One of the big issues with these statutes is that it’s tough to know.

For me, Rylie’s story hit home because I’d previously taken my younger daughter to the doctor for a running injury. I was grateful for prompt help, but what if she’d been depressed or anxious or was suffering from an eating disorder?

Would we have found groups of psychiatrists competing to provide urgent care, with evening and weekend hours? How could we know the type of service to seek? What evidence would we find on effectiveness? Would we have hesitated to make the visit — opting for “self-care” instead — as we wondered if the mental health provider would have a demeanor that made my daughter feel comfortable talking?

We’ve all internalized, to varying degrees, negative perceptions about mental illness. Would our ambivalence about acknowledging the need for help lead us to inaction? And if we did muster the courage to seek care and then later had to fight my employer-sponsored health plan to pay the bill, would we have done so with zeal? Would I have sought help from the HR office at work, particularly if I’d been the one seeking mental health care?

In my reporting, it was a psychiatrist who told me that, first and foremost, the lack of parity reflects how our society values and thinks about mental health care. But I really learned this from Rylie.

Thank goodness for real people.

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