Early in April 2020, my boyfriend Carter asked, not unkindly, if I’ve ever been diagnosed with anything besides my generalized anxiety disorder.
“What do you mean?” I asked innocently, my pockets full of rocks. He warily eyed the front of my pink raincoat, which bulged like the pouches of bullfrogs. “Can we keep the rocks down to maybe five a day?” he said. We shared the apartment with four other people and two dogs; in our tiny bedroom, the rocks I’d been collecting from the nearby Lake Michigan beach lined the base of our lamps, pooled on the warped surface of the plastic bedside table, and balanced on the radiator. “Ooohkay,” I lied.
It wasn’t just our new rock roommates, he said now. It was the way I cleaned for hours when my body and brain felt bad, or the way I went immobile whenever a bad call or text came in from home. My anxiety got so intense that I fractured a molar from grinding my teeth and my jaw once popped out of its socket; my dentist thought I had been in a car accident. Then, there was my terrible sleep, with its 3 AM wakings, muffled screams during night terrors, sleep paralysis, and, on limber nights, the convulsive jerks that torqued my whole body, startling Carter awake.
I didn’t feel pathologized by his question; I was relieved that somebody had finally asked about my mental health. Carter knew about my family’s intergenerational history of addiction and mental illness, and how often my siblings or dad have nearly died. In childhood, I coped with hyperreligiosity, then moved on to checking the breaths of my family when they were sleeping, to see if they were still alive, and collecting rocks that I thought were lonely. As an adult, there was bulimia and compulsive exercise, some reckless decisions with my life, and then—thankfully, when I had private insurance—various medications, therapies, and care. But still, I struggle.
All spring and summer 2020, I kept kicking the ball of my fritzing brain down the field to some imaginary goal of (gestures vaguely) “things” getting, if not better, at least more stable. But as I stared down the November 2020 election and a bleak pandemic winter, I knew I needed more tools to survive. And so, like many across the country, in September 2020, I went back to therapy. Or tried to. I’m on Medicaid, and while the insurance I receive through the program—Blue Cross Community Health Plan—is accepted by many dentists and primary care physicians, finding a therapist who takes it has been, in my experience, impossible.
I’m not alone. Americans, particularly if they’re low-income, elderly, young, and/or a minority, are both seeking and struggling to find mental health care in record numbers. In Illinois funding cuts and the pandemic have left 38 percent, or 4.9 million people, in “designated mental health shortage areas.” Even though Governor J.B. Pritzker recently signed into law a bill intended to fund more Medicaid mental health and substance abuse disorder treatments, it comes with a call for a more “comprehensive behavioral health strategy” from the Department of Healthcare and Family Services to be delivered to his office . . . by July 2022.
Meanwhile, lives hang in the balance as the number of practices accepting Medicaid have declined. That’s due, in part, to the dearth of available psychiatrists; in 2018, NPR reported that 77 percent of U.S. counties faced a severe shortage of psychiatrists. Additionally, despite increased Medicaid funding, many psychiatrists don’t want it. “Medicaid pays low fees, has delays in reimbursement, and comes with extra administrative burdens,” internist and Johns Hopkins School of Public Health professor Dr. Albert Wu told Reuters in 2019. The rising demand for psychiatric services among Medicaid patients and the dwindling Medicaid-accepting providers has left those providers overstretched and Medicaid patients underserved, enduring wait times that can extend for months. For people like me, with every passing week without care, our conditions can grow more disruptive and life-threatening.
When I tried to start therapy in September 2020, I used Psychology Today’s search tool and found fewer than four therapists in the Chicago-area who said they accepted Medicaid. Only one returned my e-mail. During our intake call, she asked me a number of detailed, personal questions, including whether or not I was experiencing suicidal ideation, to which my answer was a firm, “Yes.” She determined that yes, she thought she could help me and that we would work well together. But I never heard from her again.
I haven’t been ghosted since my 20s, and certainly never by a mental health professional. So I gave up on my search for a bit. It wasn’t until late November when I finally found someone who would see me. The downtown clinic didn’t accept Medicaid, but for $25 a session, I could pay out of pocket to be treated by their clinical intern who was finishing up his last year of school. Z was five years my junior and a man, both firsts for me, but with America’s motto “beggars can’t be choosers” singsonging in the back of my brain, I decided to give him a try.
I’m glad I did. Z was patient, enthusiastic, compassionate, and attentive. After a few weeks, Z asked me to consider the possibility that my anxiety was a symptom, rather than the correct diagnosis itself. He read back to me some of my own words, collected in his notebook since our first session. Then, he read through some of the criteria for stress disorders, like secondary traumatic stress and its more famous cousin, post-traumatic stress. So many of the words were the same.
Suddenly, a swirling number of experiences I’ve never thought to connect were organized like constellations. A correct diagnosis could not only bring greater clarity, it could help me heal. That’s why I needed a psychiatrist, as Z suggested, trained to give me a psychological evaluation. It had been 14 years since my first, and only, psych eval, when an unsmiling man asked me ten minutes’ worth of questions, diagnosed me with generalized anxiety disorder, and prescribed me my first SSRI (selective serotonin reuptake inhibitors, a commonly prescribed type of antidepressant). When I came back and told him the medication was making sex difficult for me, he was unmoved. “You still enjoy sex sometimes, right?” he asked. I was 19, terrified to tell a grown man that I was sexually active, let alone try and advocate for my right to sex that was pleasurable more often than “sometimes.” I’d stay on that medication for another four years, but I never went back to him.
Brains change, Z reminded me, like every part of our bodies. I would never, if I could help it, take 14 years between dentist appointments or gynecological exams. Shouldn’t my brain also get a regular checkup as part of my general preventative health care?
Z e-mailed me a list of psychiatrists to contact in December 2020. Of the five he recommended, four didn’t accept insurance. One, however, was listed as accepting Medicaid. When I called this psychiatrist a few days later, he apologetically told me he did not, in fact, take my insurance, but knew someone else who did. That person, when I e-mailed them after the New Year, told me this was also incorrect, but they’d be happy to take me on as a patient if I was willing to pay out of pocket. If I could pay a couple hundred dollars out of pocket per session, I wanted to write back, I wouldn’t be on Medicaid.
In the next eight months, attempting to get myself care—preventative care to tend to my brain before she got any worse—cost me time, mental health, and money. I asked for help from my in-network primary care physician, who can refill the meds I currently take but who is mysteriously unable to evaluate whether or not they’re appropriate for me. Two messages and one month later, she wrote to say that (despite treating Medicaid patients) she knew no psychiatrists who accepted Medicaid to refer me to, ending the message with a well-intentioned but unhelpful “;-(”. After combing the Internet, I found five other Chicago-based psychiatrists who had “Medicaid” listed on their profiles. They never returned my e-mails or my calls.
In February, I got close. For a week, I e-mailed a representative from 7 Hills Healthcare, a medical group with three locations in the Chicago area. I confirmed twice, in writing, that they take my insurance, that they provide psychological evaluations, and that there is no co-pay. A week later at the beginning of my telehealth appointment, the person doing my intake apologized for the confusion. They don’t provide psychological evaluations. She reminded me that I can always call the back of my Medicaid insurance card for help getting in-network services, something Z has also said. I thanked her, cried, and got high.
Studies show that being poor is correlated to higher rates of mental illness. What is perhaps less widely understood is that poverty causes mental illness, too. As anyone who has tried to get “help”—financial, physical, mental—knows that the process dispatches whole days to the dump. I’m a freelance journalist. When I don’t have time to work, I can’t earn income to live. This is time I could’ve spent filing a story. It’s time I could’ve used to call my mom, clean my fridge, apply for a job, run around the block—literally anything. I remind myself that in some ways, I’m lucky: I don’t have kids, I’m housed, I have a partner who loves and supports me and with whom I’m safe.
For weeks, I put “Medicaid psych” on my list of things to do, then don’t. Finally, in May 2021, I call the DHS helpline (800-843-6154) listed on the back of my Medicaid card and speak to a woman named Denise. I tell her exactly what I’m looking for—a psychiatrist who can give me a psych evaluation, can prescribe meds, and monitor if they work. She asks for my zip code, and provides me with four names: Advocate Chicago, Asian Human Services, Community Counseling Center, and Heartland Alliance.
When I call Advocate Chicago, I get put on hold, and then the call ends. I try again. The person I eventually reach says they’re at capacity and can’t accept new patients: the newest people on their docket are waiting at least three and a half months for initial psychiatric appointments. A counselor at Asian Human Services apologizes as he tells me they don’t provide psychiatric care, only therapy. Community Counseling Center says they do offer “medication management” together with therapy, but that means I’d have to leave Z, the therapist I like and already have a working relationship with. At Heartland Alliance, a representative tells me that they only provide psychiatric services after you’re established with one of their own primary care physicians, meaning I’d have to leave my current PCP. It’s unclear to me what is to be gained by disrupting the stable care I already have established in exchange for the uncertain promise of eventual help.
I interviewed Theresa Eagleson, the director of the Department of Healthcare and Family Services in Illinois, hoping to make sense of this system. She was sorry to hear about my experience and noted that the state is trying to address this issue. When I asked why psychiatrists and therapists regularly don’t accept Medicaid as insurance, Eagleson said she hasn’t seen this statistic. According to Illinois HFS, 2,126 psychiatrists are actively enrolled in Medicaid. (I was told by Kristine Herman, bureau chief of behavioral health at the Illinois Department of Healthcare and Family Services, that in recent years the state has added 33 additional behavioral services offering counseling to address capacity issues, although those services don’t include psychiatrists.)
But the number of enrolled psychiatrists doesn’t account for the phenomenon of “phantom networks,” which is when “errors” in provider directories include wrong numbers, list physicians who aren’t actually accepting new clients—and, in some cases, list providers that do not accept that insurance. In the approximately two years I’ve been on Medicaid, this has been true in my experience, and not only in my search for a psychiatrist: when looking for a general practitioner, it took me several weeks and over a dozen e-mails or phone calls before I found a provider on the Blue Cross Community Health Plans list who 1) actually took that insurance and 2) was accepting new clients.
“There’s a lot of capacity in Medicaid,” Eagleson reassured me. “Medicaid provides more for behavioral health than most private insurance.” But research tells a different story.
“Ultimately, the literature is clear that psychiatrists (especially child and adolescent psychiatrists) are more likely to accept private insurance than Medicaid, if they accept any insurance at all,” wrote researcher Dani Adams in an e-mail to me. Adams, a PhD candidate at the Crown Family School of Social Work, Policy, and Practice at the University of Chicago, researches the “availability, accessibility, and quality of mental health services in under-resourced neighborhoods.” She pointed me to a number of studies that show the inequities those on Medicaid face, including a 2011 study done in partnership with the Illinois Department of Healthcare and Family Services itself. Callers posing as parents looking for psychiatric care for their children had an 82.9 percent chance of being denied an appointment if their insurance was public (Medicaid-Children’s Health Insurance Program) versus a 48.8 percent chance of denial if their insurance was private (in the case of this study, Blue Cross Blue Shield). Neither number is great, but it’s evident that a psychiatrist is more likely to accept private insurance over Medicaid, if they accept insurance at all.
Some days, I still can’t believe that, more than a year into a pandemic which saw massive layoffs, record unemployment, hundreds of thousands of deaths, and untold numbers of long-haul COVID survivors, as well as an increase in mental illness, this country still ties “good” insurance to your employer. Medicaid has been good to my body—I got a dermatologist, a primary care physician, a gynecologist, and a gastroenterologist with relative ease—but it has abandoned my brain. I want timely, accessible, affordable care. And I want choice, not a fistful of deeply unhelpful options wrestled, after months, from the banal, cruel system we currently make poor people navigate to access health care.
We deserve so much more. We deserve access to experimental medication when appropriate, stable access to therapy and processes that don’t consume whole days. We want to live. We want more than mere survival. For me, I want to be present in my existence, in the ordinary bickering and loving with my partner, rather than getting lost in the endless twilight plains of my mind.
Z and I ended our sessions in June, but not for a bad reason. He graduated and got a job at a new place where, of course, Medicaid isn’t accepted. In August, I started looking again for psychiatrists. During our last session, Z said I have a lot of emotional “heartiness,” something that fortifies me even in the worst of times. I’m glad someone else can see that, but I wish I didn’t have to be hearty. It’s a finite resource, one best replenished with the right medication, therapeutic support, and a plain and simple break. I wish I didn’t have to only rely on my heart and my rocks to make it through.
This story was supported by the journalism nonprofit the Economic Hardship Reporting Project.