It’s a scary thing, to hear something that’s been lurking over you for decades get a name.
My therapist used words like “depression” and “anxiety.” Maybe some people take comfort in it. I didn’t. I met those labels face-to-face, for the first time, and no weight lifted from my shoulders. But it was a start.
It’s also evidence of a pre-existing condition. And if Obamacare’s repealed, it’s possible that people could be denied coverage for something like what I’m doing right now: Writing about their mental illness on websites and social media. That could include me, and millions of other Americans who’ve taken to the internet to give and take solace in the sharing of these intensely personal experiences.
There aren’t actually reports of insurance companies scrolling through Facebook feeds and rejecting claims because of a status update—yet. If the Affordable Care Act, which guarantees coverage to people with pre-existing conditions, gets repealed?
It’s absolutely something insurers could do.
“It depends on how the pre-existing condition is defined in the insurance policy, but it could very well be the case that you could be at risk even if you never saw a doctor or otherwise received any treatment for the condition,” Tom Baker, an expert in insurance law at Penn Law, told me. “The situation is that serious.”
In the GOP’s Obamacare replacement, pre-existing conditions are still covered. But there’s no guarantee it’ll survive Congress, seeing as Breitbart and plenty of Republicans have blasted the legislation for not being conservative enough.
Donald Trump’s failsafe plan is just as worrisome: Let Obamacare die, blame the Democrats, then try to pass something else in a few years. Even if the GOP plan passes, many experts think that without the individual mandate requiring people to buy insurance, the health insurance market could enter a “death spiral,” as not enough healthy young people sign up to subsidize the elderly and sick.
In other words, we’d be back where we started.
Three years before President Barack Obama signed the Affordable Care Act in 2010, one out of seven applicants were denied coverage because of a pre-existing condition, by the four biggest for-profit insurers: Aetna, Humana, UnitedHealth Group and WellPoint.
It’s not clear how many of those people had mental health conditions, because insurance companies don’t legally have to disclose that information. They can, however, look at information you post on social media. As long as it’s public, it’s fair game, and can be used by insurance companies as proof of a pre-existing condition.
“It doesn’t matter if you’ve sought out help for a pre-existing condition or not, so long as there is evidence that you do indeed have the condition,” said Allison Hoffman, a professor at the UCLA School of Law.
Tech companies have already researched how to analyze your social networks to determine whether you’re a credit risk. It’s not much of a technical leap to imagine an algorithm searching for words like “bipolar” or “depression.” It just might not be cost-effective.
“It’s possible that some insurers would invest in data-mining software to find pre-existing conditions or risky behaviors to deny insurance when someone applies,” Hoffman said.
“But I think it’s much more likely that they would go hunting for information once an insured [patient] files for expensive claims.”
Just how stingy were insurance companies before the ACA?
In a Kaiser Family Foundation study from 2001, researchers made up a recently widowed 56-year-old woman, “Emily,” who suffered from situational depression — meaning it wasn’t chronic, but stemmed from a depression she experienced after her husband suddenly died. They sent out her application to 60 insurance companies. Twenty-three percent rejected her outright, while half sent her offers with premiums increased from 20 to 50 percent.
That’s right: being depressed because of a tragedy was something that prevented people from getting insurance. And according to the National Institute of Mental Health, “Emily” isn’t so uncommon: The NIMH estimated 6.7 percent of all American adults (or 16.1 million people) experienced at least one major depressive episode over 2015.
And if you had bipolar disorder? Psychosis? There’s no way you were getting covered in the individual market, according to Sherry Glied, who served as assistant secretary for planning and evaluation at the U.S. Department of Health and Human Services under Obama.
“Mental health conditions were definitely pre-existing conditions,” she said. “They were serious pre-existing conditions. Companies do not like covering them.”
Mental health conditions were definitely pre-existing conditions
As a freelance writer before Obamacare, I didn’t make enough money to afford basic health insurance, let alone shell out the $600 a month for generic meds and therapy to treat my depression.
The cost was just another reason not to seek treatment. And I was lucky. I never had to visit a hospital or residential treatment center. Back in 2007, 62 percent of personal bankruptcies were related to medical bills, according to another Kaiser study.
Dealing with mental illness is hard enough. Under a pile of bills for tens of thousands of dollars? It can be crushing.
It took me 31 years to set up a session. Weeks of relentless insomnia forced my hand, so I made a nervous call, and walked back and forth down a sweaty Midtown Manhattan street before, finally, I managed the courage to walk into a building, and see a therapist for the first time.
I wish social media was a thing when I was a kid—it might have helped. These days, on Facebook, Twitter, Instagram and YouTube, I see young people doing what took decades for me to do. Pop stars with massive online followings—like Selena Gomez, Kid Cudi and Demi Lovato—are speaking openly about their own battles with mental illness, normalizing it for anyone who follows them.
That might seem trite to some—millennials and celebrities “oversharing” their feelings on the internet. But to anyone who’s been under the duress of depression, it’s so important. It’s a key moment in a transition from feeling that you—at some fundamental level—have been made wrong, to understanding that depression is treatable, like other illnesses, is nearly impossible to do by yourself, in a bubble. You need to talk to people. You need to hear their stories.
“I was very reluctant to say anything,” Michelle Stepp said.
She first felt depressed at 12 years old, but shrugged it off. The feelings came back five years later. Again, she tried to ignore them, unsure of how her family would react.
“I was afraid that they were going to be disappointed or ashamed of me,” she said.
Then, last year, newly married and settling into a house in Ashland, Ohio, she attempted suicide.
“Just out of the blue, I had a panic attack,” Stepp, now 25 years old, told me. “Then, for over a year, I was constantly struggling with anxiety and depression. I couldn’t get a hold on it.”
It wasn’t until she was in a hospital bed, recovering from her suicide attempt, that she decided she couldn’t be silent.
“That was the turning point, in terms of sharing,” she said. “It almost gave it validity to me, that what I was going through was real.”
Speaking out, it takes the power away from mental illness
Michelle wrote about her struggles on Facebook and websites like The Mighty. Other people’s stories, she said, had given her hope and strategies for dealing with her own mental illness. She wanted to return the favor. And she felt like it helped her, too.
“Speaking out, it takes the power away from mental illness,” she said. “It’s not in control of me. Not that it makes it go away. But I’m not afraid of it anymore.”
It’s hard to admit you need treatment, no matter your situation. But it can be harder in rural areas, where there’s a lack of mental health professionals, and in minority communities, where factors like provider bias and increased stigma hold people back from seeking help.
The good thing about social media? You can read a Facebook post without being judged. You can chat anonymously on Reddit about feelings you didn’t realize other people had.
When it comes to mental health, “social media is really the only thing pushing it forward and making it a conversation,” said Kati Morton, a licensed therapist with more than 170,000 followers on YouTube.
The way it so often happens: People watch a video or get advice online, she said, “then they get up the courage to do it in real life.”
A FUTURE WITHOUT OBAMACARE
The social media landscape is much different now than it was before Obamacare.
In 2009, the year before the Affordable Care Act was signed, Facebook had 360 million monthly active users. Now, that number is 1.86 billion. Twitter went from 14 million to 313 million users in the same period. Overall, according to Pew Research, the percentage of Americans who use at least one social networking site climbed from 38 percent in 2009 to 69 percent in 2016.
That means there are a lot more people talking about their lives online. And sometimes sharing can cost you.
Before the Affordable Care Act came along, everyone filled out a form when applying for health insurance, and if the company saw something it didn’t like—a serious heart condition, cancer, pregnancy—it could decide you weren’t worth the financial risk.
That’s why plenty of people sought therapy discreetly. Even if your therapist took your insurance (far from a guarantee), paying out of pocket meant you avoided the dreaded scarlet letter: a pre-existing condition.
Yes, therapy sessions weren’t cheap, but at least you didn’t put your entire health coverage in jeopardy.
And a lot of people had to make that choice.
In the United States, 45 million people are dealing with “behavioral health disorders,” according to the U.S. Department of Health and Human Services. That category trails only high blood pressure (46 million) as the country’s most common pre-existing condition.
Even if people aren’t routinely rejected, the possibility of being denied coverage could stifle conversation on social media.
Maggie Bertram is the associate director of training at Active Minds, an organization that helps college students speak openly about mental health.
If mental illness is once again a pre-existing condition, she worries it could “put up walls of stigma” as people worry about losing their health insurance.
That’d be a shame. Bertram’s seen young people make a lot of progress where mental health care’s concerned. For so many people, their online communities have created an open environment for them to discuss their issues, and eventually, push them to seek help.
“They don’t have the same stigma and fear as past generations,” Bertram said of students today. “When I was an undergrad dealing with mental health issues, I certainly wasn’t telling my story.”
Neither was I. There’s no way to go back in time and see how social media would have changed things for me, though I’m not unhappy about how things worked out—I got help. And while I shouldn’t have to consider myself one of the lucky ones, anybody who’s ever experienced relief from mental illness knows how substantial the difference between suffering from it daily and treating it daily truly can be.
But if there’s a chance future generations could be spared years of thinking they’re alone in their fight, it’s right in front of America, right now, as politicians are deciding whether or not to give insurance companies the opportunity to take it away, to push mental health back into the shadows, and to force people who are suffering to silence themselves—online, or off.