There’s a page in Ramona’s journal where she’s written down the dosage schedule that will eventually wean her off psychiatric medications completely. “It basically says, ‘OK take this much this day, and this amount by this day,’” the 28-year-old marketing professional, who requested her name be changed, told the Daily Dot. “It was kind of a math project.”
Three months ago, Ramona was on “a pretty healthy dose” of the antidepressant Effexor. She had been prescribed her first cocktail of antidepressants as a depressed and anxious 20-year-old, and had taken different combinations of them ever since, purchasing them with her employer-sponsored health insurance. She took the pills and went to therapy for nearly a decade, but when she was faced with losing her insurance in a cross-country move, she decided to make a change. “I got in my head, ‘What would it be like if I tapered off and took a little more ownership over my own health?’”
In late July, when the debate over the fate of the Affordable Care Act reached a fever pitch, Ramona had already begun the process of quitting her meds, but watching the majority party attempt to gut access to healthcare both terrified her and strengthened her resolve. “I had a sense of helplessness over what would happen,” says Ramona. “I was checking my phone’s notifications pretty obsessively over the past few weeks… knowing I might lose healthcare completely was difficult.”
Anxiety has been a constant theme since Trump’s election, but the fight over the future of healthcare has created an even more visceral sense of fear: The potential loss of Medicaid or health insurance access is quite literally a matter of life or death for countless Americans. Even after the repeal bill had failed, President Trump tweeted gleefully about his master plan to “let Obamacare implode.” Meanwhile, the 32 million people slated to lose insurance coverage in such a scenario still feel a great sense of unease.
The ACA survived this round—thanks in large part to disability justice activists who put their bodies on the line to save Medicaid—but the GOP managed to land a devastating blow against the current healthcare system: casting it as unstable, uncertain, and destined to fail.
“If I hear the president say that he’s going to blow up the system, do I really want to enter into that system and then become reliant on it?” asks Ramona. “Having a lack of faith in the system has made me not want to invest too much in it and try to live outside of it if I can, at least for the time being.”
A growing number of people are coming to the same conclusion. Faced with the possibility of losing health insurance, they’re opting to wean themselves off certain medications and treatments on their own terms, choosing to do it now rather than face the prospect of being forced to do it later due to a lack of insurance coverage.
“Casting healthcare into jeopardy has brought up strong feelings of financial insecurity among our communities, with folks experiencing high levels of anxiety, despair, and hopelessness about whether they’ll be able to access any form of health care at all, let alone high quality healthcare that meets their needs,” Maryse Mitchell-Brody, social worker and development director for the Icarus Project, a mental health support and education network, told the Daily Dot. “Having access to health insurance is critical for emotional wellbeing.”
When healthcare is seen as a scarce and unstable commodity, consumers are forced to ask themselves a series of potentially dangerous questions: What would I do if my coverage gets cut off and I can’t afford my meds? If I could only afford one prescription a month, which would I choose? How long would I be willing to stay at a job that makes me miserable just to keep my insurance? Do I really need to be taking all of these expensive pills?
“I started to question my medications when my access to them was threatened,” Cassie Cole, 25, told the Daily Dot. Cole stayed at her job at Starbucks for six years in order to keep insurance coverage. “I had been on Effexor for anxiety and depression for almost five years, and before that various different kinds [of medications]. I was also recently prescribed a form of Adderall. I felt like I was just at Starbucks for so long just for their insurance, just so I could buy the pills, and for what reason?”
Wanting to leave her job and not wanting to be dependent on expensive prescriptions without insurance, Cole decided to stop taking her medications in February—without telling her psychiatrist. “I didn’t trust my doctors to be on my side about coming off meds because they were so keen to keep upping my dose and didn’t believe me when I told them what worked.”
“I’m not going to lie,” she says, “it was and still is the hardest thing I’ve ever gone through. The first week of no meds I was delusional and said that I had never felt better and was so happy I quit them. I had the really common ‘brain zaps’ for a really long time and also really bad stomach pains and food intolerances that I’m still navigating.”
Like Ramona, Cole relied on online research to guide her withdrawal process. “I started doing a lot of online reading from people coming off the same meds and found that a lot of my symptoms were normal, but there was a lot of fear because there were not a lot of success stories out there. I stayed with my mom for a month so I wouldn’t be alone during the process and she was really afraid for my safety.”
Dr. Mallie Kozy, a psychiatric nurse and professor at the University of Portland School of Nursing, told the Daily Dot that the danger associated with abruptly halting certain psychiatric medications is very real. “Stopping some anti-anxiety medications, like benzodiazepines, cold turkey can actually be life-threatening, resulting in seizures, stroke, or death.” It is imperative, says Kozy, that withdrawing from these medications “be done with assistance from a medical professional.”
An estimated one in six Americans takes psychiatric drugs, with antidepressants the most commonly prescribed, followed by anxiety relievers and antipsychotics. Potential withdrawal risks vary based on the medication, dosage, how long someone’s been on them, and individual physiology. “But at the very least,” says Kozy, “unassisted withdrawal from these medications can have some nasty side effects [including] dizziness, muscle aches, fatigue, and lightheadedness.”
In addition to the effects of withdrawal, Kozy says, “there is the problem of symptoms returning if medications are stopped without the assistance of a professional.” If someone’s medications are helping stave off depression and suicidal ideation, the return of those symptoms without a medical and therapeutic support system in place can be catastrophic.
Becca, 35, knows exactly how this feels. As a cash-strapped graduate student in the days before Obamacare, health insurance was financially out of reach, and she couldn’t afford to purchase her monthly prescription of Zoloft out of pocket. “The generic brand of Zoloft wasn’t available yet,” she told the Daily Dot, “and a one-month supply was $100.”
Without support from a doctor and with no way to cover the cost, when her pills ran out, so did her options.
“After a few days without meds, I [experienced] sore muscles and flu-like symptoms,” she says. “There is a misconception that depression is only in your mind. For me, it is physically painful. And once you start to feel it creeping back into your body, it is an unstoppable wave.”
Within a few months of quitting medication, Becca had a horrible depressive spell. “I couldn’t get out of bed, and I was trying to talk myself into getting it together, but I was terrified of having a human interaction without crying. I failed out of my graduate program. My friend came and got me, drove me back to my parents’ house and borrowed money from my mom to get me back on medication.”
Cole, for her part, says she’s still struggling after getting off meds, but is feeling “somewhat stable” again. She eventually quit Starbucks, and thanks the ACA, she was able to get back on her mom’s insurance—at least for another year.
Looking back, she doesn’t regret her decision to go off her meds, but wishes she hadn’t felt like going it alone was her only option. “Consistent, affordable health care would have made me feel a lot better about asking for help and for what I really need. [This experience] taught me a lot about how the healthcare system works,” she says. “It doesn’t.”
Mitchell-Brody of the Icarus Project says many mental health professionals agree with Cole’s assessment. “Most of us working within the mental health mainstream believe the system is broken,” they said. “It keeps individuals from feeling like they have a sense of agency over their own experiences. What we want to do at the Icarus Project is not to say, ‘Do this, do that, don’t do that,’ but to make sure there are a range of options and that everyone has knowledge of the options available to them, and access to those options.”
The Icarus Project’s Facebook group has added 10,000 new members in the last year, many of whom “are looking for a wider range of options and approaches than the mental health mainstream.” One of the Icarus Project’s most popular resources is its Harm Reduction Guide, a 52-page illustrated manual for coming off psychiatric drugs. Mitchell-Brody wants to underscore that the goal of the organization is to give people information and resources on all the options, rather than advocating a one-size-fits-all solution. “I think the Icarus Project is often associated with being anti-psych meds, which we’re not. We are radically pro-self-determination.”
Self-determination, in the context of healthcare, is about being well on your own terms, and making choices about your own health that feel right to you. The key word here is choice. It’s one thing to want to try getting off psychiatric medications for your own reasons; it’s another to feel like you need to get off them before you lose coverage and can’t get them any more.
If the Medicaid gap widens and private insurance coverage becomes harder to access, it can only be assumed that more people will take this choice into their own hands, bypassing the insurance system however they can. Case in point: People have been buying (and enthusiastically reviewing) ”fish antibiotics” on Amazon to avoid expensive doctor’s visits and prescription costs. (Please do not do this. The Daily Dot does not condone the purchase or consumption of fish antibiotics for humans.)
Luckily, there are alternatives that are more above board and species-appropriate. Certain forms of birth control are available in many states without a doctor’s visit or insurance, and can be ordered online and delivered to your door. Discount prescription websites like Blink Health offer low-cost prescriptions (for humans), and affordable generic options are now available for most antidepressants. In an attempt to shift the paradigm away from the traditional for-profit health system, some innovative community clinics provide collective healthcare at low or no cost.
As Mitchell-Brody points out, “We know that we have a long way to go to ensure that everyone has access to quality healthcare. This [recent repeal effort] was a huge reminder of just how precarious our access to basic healthcare truly is in this country.”
Ramona, for her part, wishes that politicians understood how much of a toll the ongoing healthcare debate has taken.
“The daily stress of living in this country is difficult to quantify, but it’s starting to affect me emotionally and chemically and physically, and when people are worn down like that, taking care of yourself is really hard. Because of that, we need these services more than ever. When you’re not sure if you’re going to get paid, when you’re not sure if you can take care of yourself, it creates a huge sense of stress and mental strain that it doesn’t seem like anyone cares about,” she says.
With millions of people un- or underemployed and facing constant uncertainty, watching leaders attempt to undermine access to basic healthcare has sparked a sense of deep disillusionment—about much more than insurance deductibles.
“I don’t think the American ‘Work hard and you’ll be OK’ attitude is working any longer,” says Ramona. “It’s not real.”
Editor’s Note: Please consult a physician before stopping or changing any prescription medication. If you are a teen dealing with depression or other mental health issues, see PBS.org for a list of resources and organizations that can help you. If you are an adult, see Mental Health Resources.