Advocates must seek to shift the discussion regarding withdrawal from psychotropic medication into the world of mainstream mental health care. One barrier to these efforts is bias that stigmatizes people with mental health issues. Stigma contributes to patients’ decisions to move conversations about withdrawal to anonymous online forums. This hampers efforts to incorporate patient experiences into psychiatric practice.
Unfortunately, public health anti-stigma campaigns may make the problem worse, by reinforcing a belief that people with mental health issues must have treatment. We should reframe this anti-stigma work to validate the experiences of people who decline treatment, particularly medications, or who are pursuing withdrawal.
Stigma surrounding mental health problems
It is widely recognized that people who have or are perceived to have mental health issues are stigmatized. They may be labelled, othered, devaluated, or discriminated against.
Moreover, people with mental health conditions often find attempts to access care stigmatizing. These patients may encounter clinicians who engage in diagnostic overshadowing, ignoring physical complaints or otherwise invalidating patient experiences because they cannot look beyond the mental health diagnosis. Mental health professionals also may stigmatize patients by discounting their abilities.
Stigmatized by caregivers in these ways, people won’t seek a prescriber’s help to discontinue medication. Instead, people turn to other laypeople, who don’t stigmatize the person or invalidate them.
Stigma keeps conversation regarding medication withdrawal under wraps
If stigma prevents people from accessing and staying engaged with treatment, at the same time it almost certainly inhibits many people already taking psychiatric medication from openly discussing the possibility or pendency of withdrawal. In fact, people pursuing withdrawal may face even more stigma than others with mental health issues.
Many people share the belief that mental illness should be addressed with medication, with some even supporting coercive treatment. One study found that 42% of participants thought people diagnosed with schizophrenia should be forced to take prescription medication and 24% thought the same for those with major depression.
When people believe that there is a biological explanation for mental illness, stigma against those who want to discontinue medication may increase. As psychologist Bruce Levine asserts, “Attempting to exact compassion and love through compelling the belief in ‘mental illness as biochemical medical illnesses’ has not only failed but has created more stigmatization.”
Levine cites a Canadian Health Services Research Foundation review which argues that when the general public understands mental illness as biologically-based, they might not blame persons with mental illness for their condition, but may perceive them as lacking conscious control and, therefore, as dangerous.
The popular conception of people with mental illness as lacking internal restraint and requiring medication likely leaves many members of the general public suspicious of patients who decide to forgo medication. What could be more frightening than a person who wants to remove the controls that a prescriber has already deemed necessary?
Participants of online communities focused on withdrawal generally remain anonymous. That people hide their attempts to discontinue medication is evidence that stigma is at play. As one leading online community instructs new users, “Because of the sensitive nature of the discussions, members are encouraged [to] protect their identities with pseudonyms.”
Anti-stigma campaigns successfully address bias and highlight resource gaps
Anti-stigma campaigns have had laudable success in addressing misconceptions and bias against persons with mental health difficulties. For example, researchers examining ten-year trends in public attitudes before and during the British Time to Change anti-stigma campaign found a significant increase in positive attitudes in relation to prejudice and exclusion after the campaign’s launch. They also found a “relation between campaign awareness and regional improvement in knowledge” and attitudes regarding “tolerance and support” and “prejudice and exclusion.”
Anti-stigma campaigns also have successfully highlighted the barrier stigma presents to those who seek mental health treatment. Often, these campaigns feature individuals who, because of stigma, could not locate or were dissuaded from pursuing such treatment. For example, Boston’s 2016 Deconstructing Stigma campaign, sponsored by a group of mental health advocacy and treatment organizations, featured 90 individuals, many of whom described their difficulties in accessing mental health care.
Similarly, when, in the same year, Massachusetts Department of Public Health Commissioner Dr. Monica Bharel endorsed the National Alliance on Mental Illness of Massachusetts’s campaign, CEOs Against Stigma, she said: “Mental-health conditions must be treated like we treat other health issues—with respect for the individual and appropriate medical care. Stigmatizing these conditions prevents those in need from getting care they deserve.”
But anti-stigma campaigns also reinforce the medical model of care
While anti-stigma campaigns may make people more comfortable accessing mental health services, often such campaigns explicitly promote professional psychiatric care. Researchers David Pilgrim and Anne E. Rogers analyzed the design of the British Royal College of Psychiatrists Changing Minds campaign. They note a downside that wasn’t readily apparent: intrinsic to the campaign’s agenda was “an explicit emphasis on the need for the profession to re-socialize the public to accept a professional conception of mental health problems….it is not clear inherently what this has to do with stigma or its reversal.”
The result was a policy document driving the campaign that was less about reducing bias and more about promoting “a particular and positive image of psychiatric care and expertise.” That care, if provided by psychiatrists, is typically a prescription for medication.
Pilgrim and Rogers point out that the Changing Minds campaign was just one of many that emerged in the 1990s, driven by charities, the government, or mental health care agencies. These entities may bring different perspectives to the task. These researchers caution against professionally-led campaigns. Reflecting upon Changing Minds, they write: “The emphasis on the ‘common’ appearance of mental disorder for ‘every family in the land’ also implies an extensive unmet need for psychiatric treatment—a coded demand for more investment in professional services.”
Anti-stigma campaigns can also reinforce the medical model of care, even when the campaign goals do not reflect that purpose. A study examined the impact of Time to Change, a short-term campaign in Cambridge, England, which sought to convey three messages: “There is something you can do to help;” “Mental illness is one of our last taboos;” and “Mental illness is far more common than you think.”
Researchers found significant increase in beliefs about the value of professional help and medication post-campaign. At the end of the campaign, the study found a 24% increase in persons agreeing with the statement: If a friend had a mental health problem, I know what advice to give them to get professional help, and a 10% rise in agreement with the statement: Medication can be an effective treatment for people with mental health problems.
Anti-stigma campaigns ignore the topic of withdrawal
Mental health campaigns to combat stigma appear not to have focused on how stigma affects those who want to pursue medication withdrawal. For example, only a handful of those profiled in the Massachusetts Deconstructing Stigma campaign—Alan, Jessica, Amy, Joe, Ashley and Molly—even addressed frustrations and failures with drug treatment.
None of the campaign’s participants described how stigma had prevented them from seeking help to discontinue psychiatric medications. Instead, by suggesting that stigma should be eradicated so that patients can access treatment, campaigns may imply that treatment engagement is a universal goal.
In this respect, anti-stigma campaigns simply reflect society’s embrace of medication as the sine qua non of psychiatric treatment. In 2019, the Center for Disease Control and Prevention reported that 15.8% of U.S. adults had taken medication for their mental health in the previous twelve months alone.
Our expectations regarding medication as treatment infuse anti-stigma efforts. For example, one psychologist suggests that stigma will decrease if patients are more forthcoming about their medication use: “The stigma persists, from my observations, due to the fact that very few people who use psychiatric medications (or have done so in the past) let others know of their usage.” Again, the implication is that mental health consumers should take their medication (and talk about it).
Thus, anti-stigma campaigns have not simply promoted treatment accessibility. They have reinforced a secondary message, in addition to their more overt anti-discrimination one: that people with mental health issues should seek and accept treatment.
While anti-stigma campaigns should make space for patients to openly pursue and discuss their treatment, without a more comprehensive focus, campaigns exclude the concerns of many persons in the mental health system who are contemplating withdrawal. Moreover, anti-stigma work may even reinforce stigma against people who want to withdraw by implicitly supporting medication compliance.
Anti-stigma campaigns should modify their message
To meet the needs of all people with mental health issues, anti-stigma campaigns should change their appeal. They should address the stigma that inhibits discussion of problems associated with psychiatric medication, including withdrawal effects. Campaign leaders also should ensure that they are not exclusively promoting conventional treatment modalities, including psychiatric medication.
The work of reimaging anti-stigma campaigns is underway. British researchers reviewing anti-stigma programs convened a focus group of mental health service users to ask them what should be done to tackle the problem of stigma. The group urged going beyond traditional public education work to change the underlying mental health system: “[M]ost of the participants rated ‘reform to the psychiatric system’ as the most important aspect for challenging psychiatric stigma.” Participants proposed reforms such as encouraging clinicians to listen more attentively to their patients and replacing the emphasis on the biomedical model in favor of improved access to psycho-social interventions.
Moreover, advocates have created public campaigns specifically geared to change how the health care system responds to those undergoing medication withdrawal. In 2017 to 2018, people impacted by drug withdrawal symptoms were invited to submit personal accounts of their experiences, including their interactions with health professionals and the public, to parliamentary committees in Scotland and Wales. Then, researchers who studied these accounts urged a range of reforms including updated guidance regarding withdrawal, physician education, dedicated withdrawal services, and an improved feedback mechanism for patients.
In these ways, through anti-stigma campaigns and system reform more generally, advocates can support those pursuing withdrawal. By elevating the prominence of withdrawal as a necessary part of the discussion about treatment with psychiatric medication, advocates can ensure that these campaigns and the psychiatric treatment community are part of the solution and not contributing to the problem.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.