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.
All the talk about “stigma” is a pristine example of flipping the script. The Critical Psychiatry movement was never about stigmatizing broken, damaged, hurting human beings. It is about stigmatizing an industry which preys upon broken, damaged, hurting human beings.
The anti “stigma” campaign is run by the very same people who fully practice stigma in action. The courts, the cops, the lovely mental workers and our healthcare system.
They do something even more disgusting by saying. “this person is ill, he/she can’t help being sick in the head”. That is how their “anti stigma” shtick operates.
No thanks. My neighbour might think I’m nuts but won;t kick me out the door if I’m suffering from a headache.
The “anti-stigma” campaigns do reduce stigma which can be parsed from your, Rebel’s and Patrick Hahn’s comments. These campaigns reduce stigma for the people pressuring and forcing people to take psych drugs. Stigma is reduced for the family members and friends who interact with the “ill, dangerous, crazy people, who need to be drugged.”
The most insidious aspect of this is that people wrapped and reformed in the psychiatry complex have internalized this. One common response when I show people taking psych drugs the research showing the drugs only have negative long term outcomes is a variation of “you’re stigmatizing me.”
They’ve been bullied if not forced/coerced to take these drugs. They started taking the drugs in part because they were stigmatized and bullied to (examples include coerced hospitalizations, the phrases “seek help” “they’re off their meds”, schools, medical offices etc). Any attempt to quit them causes stigma. I know this first hand. My drug withdrawal was easy. I was the most productive, social, happy and healthy I had been in years. Even then the harassment because I stopped taking the drugs was hell. Many of those taking psych drugs transfer the stigma, harassment and discrimination caused by psychiatry onto the anti-psychiatry messenger.
A good article. Timely.
To be blunt though, I feel there is no need for an anti stigma “campaign” if the only “campaign” you tell each person on the planet to do is love who they themselves are, and love themselves dazzlingly enough to tell anyone to f**k off if they disagree with their own free choices.
I am often suspiscious, being a paranoid schizophrenic, that any “campaign”, be it dedicated to helping the suffering earthquake survivors, or suffering victims of any natural or unnatural disaster, can occasionally be diverted into lionizing any current symbolic underdog for nefarious reasons that have little to do with actually allowing the diverse voices of those victims to speak for themselves. Even an anti stigma “campaign” can be co-opted and its highly contentious hot potatos used to construct a mount or a podium of worthiness for pundits of regional religion or politics to pontificate off. Where ever I detect worthiness in someone I often peek under their halo and find rage. Worthiness is often about trying to feel morally decent. And trying to feel morally decent is often about secretly feeling you are the complete opposite, usually through buying into someone elses narrative of shame. Thus “stigmatized” as not being decent enough, a person will inevitably find an “other” who is less decent with which to draw a comparison with. So that they can crown themselves with the tiara of worthiness. The trouble with a “campaign” against stigma is it can escalate into a self-righteous vindication against all the apparent “others” or “stigmatizers” who ever sat in a bar snacking on potato chips, the same potatos the “campaigners” see as hot potatos that must be built from a molehill into the mountain of a lectern.
I have long seen it coming, the merry jig of Big Pharma to bill and coo into the ears of potential pill pouting punters, telling them to feel no shame about being mentally ill enough to need pills. I can see well how this delays people from coming off pills they may detest and pills that may be damaging them. But I do not believe that in whipping mental illness out of the hands of those who definitely do feel really really really ill, as if by restraining their free choice to see their illness how they want to, you miraculously and worthily “save” them from their really real actual illness feelings, even if you do manage to close the malignity of the drug cupboard hatch. I think it is a dark path that anti-psychiatry is jaunting worthily down if it aspires to “cleanse” all people of their experience of illness in their mind. Playing cosmic healer may “stigmatize” those who are not wanting to join an anti-stigma “campaign” that lionizes their victimhood at the same time as victimizing them for being like misbehaving children who do not know whats good for them and who choose to retain their right to know they feel ill in their mind, even those who see no problem in keeping their preferred diagnosis.
Who the hell doesn’t stigmatize?
Every man, woman, LGBTQ person, and cat and dog stigmatizes. Before I go down my street for a coffee my mad little cave woman brain has stigmatized a dozen potential latter day sabre tooth tiger threats. We are all frightened of strangers. So this is why we have amygdalas and adrenalin glands. If you look for a “stigmatizer” you will find plenty everywhere you rest your gaze.
I am trying to say that I have often felt stigmatized by advocacy “campaigns” who do not take kindly to my “campaigning” for everyone, even the people you dont like, having freedom of choice to define themselves in any way they wish to.
Whilst I want to see as many people as possible given support to withdraw from often odious neurotoxins, because I think the scandalous over prescribing of these drugs and injections and gadgets are killing people, what I do not want to see are people being unwelcome to knock on the door of a worthy “campaigning” advocasy just because they have not “shamed” themselves enough for keeping their identity. I dont want to see those people who are desperate to quit bad meds being ridiculed and stigmatized for not being “anti-stigmatizers” of themselves.
To do so leaves them no place to go but back to their compassionate psychiatrist.
I think, maybe, twenty to thirty years ago, “stigma” was an issue in mental health in receiving treatment. However, now, it is just overrated and is used more as a matter of societal pressure (or bullying, etc.) to get people to receive treatment or punish people in some way if they choose not to receive treatment. “Stigma” has been used by groups like “NAMI,” Mental Health of America, and other such groups to obtain money, membership and like I said, “bully” people into treatment. So, when it comes to withdrawal, a subject these “stigma advocates” do not want to discuss, again there is “bullying” to keep those who question their medications and treatments from taking steps to withdraw from them. However, what these groups may not understand is that, in many ways, no matter how much “bullying” they do, it is out of their hands. I cite myself as an example because for me the drugs, treatments, and therapies were finally rejected by both brain and body. I guess, it might be considered a “last ditch” effort by my brain and body to save my life or it could be considered “Divine Intervention.” Of course, now we have “stigma” against those who are “psych survivors.” It is almost a double stigma. And, few understand or for instance know of Robert Whittaker’s and others work in this area. I do not share how I got to where I am, whom I am, with anyone, except “anonymously” on-line. Few understand or care what happened to me while under the drugs, etc., the withdrawal process, or how it affects me now. Sometimes, not even one’s own family members. But, in my heart, someday, we will be able to let our issues be more known to the world. I just don’t know when that someday will be, so I would definitely like to express my gratitude to the author for this informative article. Thank you.
It’s not even just that few care about the damage done by psychiatry. It’s that they blame and attack the victims with it. Having family members tell you to take more psych drugs, even when you’ve told them the harm they’ve caused you, and shown them the long term science, is beyond my desire to describe. “Do I need to call to get you psych-hospitalized?” Is a death/torture threat, even if the family member refuses to see it for what it is.
I have had that happen to me. I, then, remind them how I could not even sign my name while under the influence of these drugs or how much per month we were paying for these awful drugs or how I was not even trusted to make a semi-adult decision, etc. And, yes, can you see how clearer my mind and words are, now. This shuts them up. However, I have a difficult time with getting them to understand how some things have changed due to the damage done to my brain and body from my long years on these drugs, but, especially the brain and what I am able to do and not do and my picky eating habits and a whole host of “quirky” and not so “quirky” things. Most people seem to judge how you should act and react based on they have and reacted to their medical and other experiences which are well not like yours at all—many times, not even close… Thank you.
So long as we, or any of our “advocates” argue (with those who say) there is a stigma to mental health issues, that we are stigmatized, they harm. We are widely discriminated against, in policies in acts, in language itself. We face prejudice from many corners, repesent the issue honestly.
Editors please take note. You, too, need to become aware of the harm in repeating those words.
Harold A Maio
You are absolutely right, Jennifer, a discussion on psychiatric drug withdrawal is definitely needed. Since many psychiatrists and psychologists claim ignorance – or are actually ignorant – of both the common withdrawal symptoms of the psych drugs, and the duration of how long it may take for those withdrawal effects to roll out, or how long they will last. And this, of course, means “the psychiatric treatment community [have been for decades and still] are … contributing to [and I will go so far as to say causing] the problem.”
An example is the medical community’s ignorance of the common symptoms of antidepressant discontinuation syndrome, which in reality, should be called antidepressant withdrawal. Personally, I had the common symptom of antidepressant discontinuation syndrome, “brain zaps,” misdiagnosed in late 2001. The “mental health” workers I worked with, with great hubris, confessed to knowing nothing about this common antidepressant withdrawal symptom until 2005.
Not to mention, antidepressants and antidepressant withdrawal can result in “mania.” Which has been massively misdiagnosed as “bipolar,” resulting in a completely iatrogenic “bipolar epidemic,” as Whitaker so wisely described in his book “Anatomy of an Epidemic.”
Despite this disclaimer being clearly stated in the DSM-IV-TR, so the “mental health” workers I worked with should have known better. The pissed off, and unethical psychiatric industry did take this disclaimer out of their 2013 published DSM5, to ensure even more, systemic, “mental health” industry malpractice, for profit.
“Note: Manic-like episodes that are clearly caused by somatic antidepressant treatment (e.g., medication, electroconvulsive therapy, light therapy) should not count toward a diagnosis of Bipolar I Disorder.”
And the “gold standard bipolar treatments,” which today include the “schizophrenia treatments,” the antipsychotics (aka neuroleptics).
I know those here at MiA are tired of me mentioning this. But since it has not yet been mentioned by the mainstream media, I will point it out again. The “schizophrenia” treatments can create the positive symptoms of “schizophrenia,” via anticholinergic toxidrome. And they can also create the negative symptoms of “schizophrenia,” via neuroleptic induced deficit syndrome.
Psychiatrists, as medically trained doctors, should all know this, but seemingly don’t. Their scientifically “invalid” DSM has functioned to miseducate all the non-medically trained “mental health” workers.
And, let’s be realistic, non-medically trained “mental health” workers should never be able to “diagnose” anyone with anything. An older nurse friend of mine did state this used to be the case. But, make no mistake, many of them now do believe systemically misdiagnosing people for profit, is their right.
Thank you, Jennifer, for being one of the very few lawyers, speaking out against the systemic crimes of our scientific fraud based “mental health” industries.
The long term research shows that psych drugs do cause the positive and negative traits marked as schizophrenic. Your comments show one evidence based way the drugs cause them.
What I am tired of isn’t you posting the same science over and over. I am tired of society ignoring it because they don’t want to face the monster they created. You’re one of the rare humans doing good and actually working to solve the problem.
Thank you, Jennifer, for this excellent post. With “anti-stigma” campaigns, follow the money and guild interests and you will usually find the partnership of pharma and psychiatry promoting the biomedical model, typically through astroturf organizations like NAMI. Their agenda is not to reduce stigma per se, but rather to redefine stigma as not believing that psychological struggles are biologically-based mental illnesses that require drug treatment from doctors. Not believing the biomedical model means you have “poor mental health literacy.” People don’t naturally see things this way but decades of intensive marketing have changed societal attitudes so effectively that those of who now oppose the biomedical model (which is scientifically inaccurate, philosophically bankrupt, and harmful to public health) are considered ignorant and prejudiced. George Orwell would be impressed.
You’ve quickly become a personal hero, Jennifer.
These points have been playing out in online arguments for years from a minority of vocal withdrawal victims. As one of them, I cannot tell you how nauseating it is to be beaten over the head with commercial “anti-stigma campaigns” everywhere one goes today (like Logan airport as you’ve highlighted). When merely speaking to our harrowing experiences we’re told that we’re “pill shaming” by outlets like The Mighty and so many more. https://themighty.com/video/stop-pill-shaming-mental-health-medication/
The link between “anti-stigma” ->”seek treatment”-> “get on drugs” is explicit. Well, there must be something wrong with the commonly held syllogism that our “prolific mental health stigma” is preventing people from seeking “help” since between 1 in 4 to 1 in 5 Americans is taking a psychotropic drug.
The hypocrisy is something else. If you want a lesson is stigmatization try being a vocal psychotropic victim 😉 Although we abound, we occupy practically zero mainstream space. We have no social or policy recognition (like disability). And whenever and wherever we speak about our experiences, we are invariably met with delegitimizing and unsympathetic “but, buts” as people struggle to uphold their pre- programed schemas. Good times.
I’m not even getting to the decision to publicize my name along with my story and these minority views. I refuse to be ashamed, even if it may mean poverty.
I’d like to see a campaign against the “stigma” of NOT taking psych drugs or NOT allowing ourselves to be “diagnosed!”
Isn’t that the truth. The only places I have ever been shamed is in medical circles.
If one considers that “stigma” is the by-product of fear of differences within humanity and the act of social shaming based on these differences (bigotry), and that these, in turn, inevitably cause flash rage and violence within that very same humanity, then perhaps the commitment to “a deeper sense of compassionate understanding among human beings for the purpose of peace in the world” would be an appropriate, and hopefully more fruitful, “campaign”–for anyone at all. Personally, I consider it a lifestyle worthy of pursuit.