As we look back on the year and the decade, let’s celebrate millions of people advocating for better outcomes in mental health care.
Together, we have created a movement that rejects coercion, force, and pharmaceutical propaganda and embraces informed consent, individual choice, and alternative ways to deal with distress. Through mutual aid, we’ve challenged medical misinformation, built peer support forums and groups, and shared learning and experience from a harm reduction perspective.
We’re deeply humbled and grateful for these supportive communities, the caring and solidarity we see, and the friendship, guidance, and community we’ve enjoyed. People have devoted countless hours caring for each other and supporting better choices, including quitting psychotropic drugs. Without that support, people fall through the gap in medical care and are exposed to greater drug harm.
Our people are vulnerable, emotionally and physically. People need community, and for a global movement, that’s often through social media. Sometimes people see others at risk and rush in to save them. Out of an overwhelming desire to help, they resort to harsh tactics, arising from personal painful experience or a burning desire to counter medical mythologies. However, careless, discouraging drive-by comments on a social media platform may have unintended consequences, even if meant to be educational. Unfortunately, zealous impulse can result in further harm rather than help.
We urge everyone to think carefully about how we affect vulnerable people in social media environments that are often colored by snark and cruelty. Nothing is black or white in the mental health field, the shadings are infinitely varied. One size does not fit all. Let’s think again about our approach to mutual aid.
Can people be scared into harm reduction?
Since going off psychotropic drugs is a frequent topic of conversation, we present it as a context for mutual aid in action.
Harm reduction means reducing the potential for something terrible happening, rather than guaranteeing a good outcome. Because medications are inherently unpredictable, tapering psychotropic drugs carries risks, including withdrawal symptoms and, in extreme cases, protracted withdrawal syndrome, suicidality, and disability. However, tapering usually reduces the risk of harm compared to abrupt discontinuation (cold turkey). It is a harm-reduction technique that helps minimize these risks when discontinuing psychotropic medications.
Some well-intentioned people on social media take an aggressive approach to convincing others to taper slowly, sometimes insisting that tapering must take years or even a decade—or else. The issue isn’t the advice to taper itself, but the fear-based messaging that can paralyze people, making them too afraid even to attempt to reduce their medication. Telling people they’re destined for the worst possible outcome can create a self-fulfilling “nocebo” effect, reinforcing the very dependence they seek to escape.
Conventional mental health care already uses fear to enforce obedience, warning of disaster if patients deviate from their treatment. In withdrawal communities, the same authoritarian “or else” may come from a desire to protect, but it is punitive and unkind.
When psychiatric survivors warn that going off will be worse than staying on, we risk enforcing the exact same compliance once imposed by the psychiatric system. Good advocacy does not rely on fear or shame. No one can predict the future for any individual, and enforcing compliance through intimidation only mirrors the very psychiatric system many seek to escape.
To our knowledge, every study on psychiatric drug treatment or withdrawal shows different people experience different things. There is a range of outcomes. While going too fast off psychotropic drugs may end in unmanageable withdrawal symptoms or crisis, some people have come off their drugs quickly or even cold turkey without major problems.
When speaking to someone who has just come off psychotropic drugs, no one can predict their outcome. Some taper quickly, face difficulties, and are told they failed by not doing it “right”—but they did the best they could with the information they had when they stopped their drug. Telling someone in distress their suffering is their fault is not support, it’s shaming.
Should you tell each person to expect the worst & then walk away? Warning others that protracted withdrawal will “destroy your life forever” can push an already frightened person into panic or even suicidality. Every day, people terrified by careless comments in our communities seek reassurance from peer counselors.
Instead of spreading doom, let’s foster support and hope in our communities.
Helping people find the escape hatch
How can we communicate harm reduction principles of tapering, without emphasizing the worst possible outcomes?
Much is misunderstood and very little is known about what happens when people go off antidepressants or other psychiatric drugs. As Framer writes:
The entire field, including addiction medicine, has overlooked the significance of debilitating psychotropic [protracted withdrawal symptoms], and, consequently, the importance of individualized tapering to minimize withdrawal symptoms. (Framer, 2021)
While it’s wrong to deny the reality of protracted withdrawal, it’s also wrong to say that going off antidepressants or other drugs will always result in protracted withdrawal. We need to acknowledge that the results are unpredictable.
Is it misleading to urge others not to fall into despair for the future? Even interpreted critically, studies (such as Lewis, et al, 2021; Kendrick, et al., 2024) show that a sizable proportion of people, perhaps a third to a half, can quit antidepressants in the most haphazard ways and do well in the end. This is not to agree with the current state of risky tapering practices among medical professionals—to avoid injuring half, they should employ harm reduction techniques for everyone. But this diversity does show that going off psychiatric drugs in an “uninformed” way is not always disastrous. And recognizing this roll-the-dice reality by no means discounts the toll in withdrawal syndrome paid by the unlucky half in these studies.
Throughout our entire careers in this work we have shouted from the rooftops: “Gradual tapering is harm reduction! If you had a hard time coming off it might mean you need to try slower next time!” We agree with Horowitz and Moncrieff, who recommend gradual, hyperbolic tapering as the standard of care, relative to each individual experience of what is tolerable in the process, and balanced with choice around all the unknowns and the ongoing harm caused by medication exposure:
The rate of reduction requires striking a balance between harm caused by ongoing exposure to the medication and harm caused by too rapid reduction, a balance that will vary for each individual. (Horowitz and Moncrieff, 2024)
Individualized tapering is precisely that—individualized. In the not-too-distant future, we sincerely hope more people will be able to find medical professionals who know how to guide individualized tapers in this way.
As for the method, any tapering is better than no tapering. There is no dogma to this. Peer support groups have long recommended exponential tapering. Dr. Horowitz has shown that hyperbolic tapering may be more closely related to the actual drug action. Either method involves reductions getting progressively smaller, and either could work.
But the harm reduction strategy depends on the individual’s situation. In some cases, rather than continuing the drug by slowly tapering, going off quickly and risking withdrawal syndrome may be advisable. People who are presently suffering severe adverse drug effects, such as akathisia, might be better off tapering rapidly or simply stopping the drug. In these situations, the present drug risk may be greater than the potential withdrawal risk; a shorter rather than longer taper being a harm reduction strategy to reduce the potential for worsening drug effects.
Every time we meet someone considering psychiatric medication discontinuation, let us calmly and compassionately educate around gradual tapering with support as the standard of care—as it should be—as well as standards of mental health care that are patient-centered, collaborative, and respectful of individual preference and choice.
Questioning the pill, not the patient
The fact is, some people choose to be treated with psychiatric drugs, with full knowledge, an informed choice, and don’t want to stop their drugs. They may believe that the drug regimen has enabled them to have a good life. They may have made the best choice for themselves at the time. You may have been one of these people, as most psychiatric survivors were.
We agree with Wunderink:
We still do not understand the most important mechanisms causing psychosis and relapse, nor are we able to predict who is dependent on antipsychotic drugs after remission of psychosis and who is not. To accept this is important but may be even more important is to work together with your patients and try to find the best individualized treatment for every single person having to deal with psychosis. (Wunderink 2024)
You may recall the “Post Your Pill” campaign on Twitter (now X). This was supposed to be an anti-stigma campaign, which is a little odd because it appeared to be praise for drugs instead. Regardless, those “posting their pills” attracted many dire warnings from activists trying to educate them about drug dangers.
Sometimes these well-meant cautions veered into dire warnings or personal insults. About 10 years ago, the term “pill-shaming” was coined in defense of those committed to their drug regimens, to deride those opposed to the medication.
One person’s poison can be another’s remedy. But what about when we suspect the person’s drug regimen is dangerous? Questioning the pill has to be done with the greatest compassion for the patient—sharing and caring, not overbearingly exaggerating the risk, harassing, or calling the person names that might cause them further distress.
It’s a fine line between questioning the pill and insulting the patient. If a person is convinced of the value of their drug regimen, harm reduction can mean supporting the person without judgment, shame, predicting a bad outcome, or coercion. If you can’t tolerate their decision, it may be best to step away.
Offering mutual aid
Whether people take their drugs or stop their drugs, it’s an individual choice, where the future is unknown and can’t be controlled by anyone. People have the right to take informed risks if that’s what they want. Respect for autonomy and self-determination in the context of informed consent is at the heart of the patients’ rights movement.
What about the basis for informed consent? Educating people about risks means calmly informing them that certain bad things may happen or can happen (“may” and “can” to allow for the many exceptions). Psychiatric drugs may induce disastrous effects, akathisia, suicidality, violent behavior, enduring sexual dysfunction, severe withdrawal among them, but they do not always do so. The reality is that an unknown number of people will experience the worst, which should be enough to give anyone pause, but this will not happen to everyone.
Even if the probability of an adverse effect is known—very rare in any aspect of psychiatric drug treatment—no one can predict it will happen for any individual.
Out of caring, let us humbly share our own knowledge and experiences. Let us not judge, shame, or predict the future for the people we meet, but instead communicate calm compassion in the face of choices without certainties. We recognize these are messy, complicated human realities, and we can’t control how diverse and individual each person’s journey will be.
Trust people to find their own way. In supporting someone, be aware of each individual’s sensitivities, vulnerabilities and resources. Acknowledge what we know—and what we don’t know.
The most important lessons of all? Learn and decide for yourself. The direction forward is within you.
References
Framer A. What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications. Therapeutic Advances in Psychopharmacology. 2021;11:204512532199127. doi:10.1177/2045125321991274
Horowitz MA, Moncrieff J. Gradually tapering off antipsychotics: lessons for practice from case studies and neurobiological principles. Current Opinion in Psychiatry. 2024;37(4):320-330. doi:10.1097/YCO.0000000000000940
Kendrick, T., Stuart, B., Bowers, H., Haji Sadeghi, M., Page, H., Dowrick, C., Moore, M., Gabbay, M., Leydon, G. M., Yao, G. L., Little, P., Griffiths, G., Lewis, G., May, C., Moncrieff, J., Johnson, C. F., Macleod, U., Gilbody, S., Dewar-Haggart, R., … Geraghty, A. W. A. (2024). Internet and Telephone Support for Discontinuing Long-Term Antidepressants: The REDUCE Cluster Randomized Trial. JAMA Network Open, 7(6), e2418383. https://doi.org/10.1001/jamanetworkopen.2024.18383
Lewis, G., Marston, L., Duffy, L., Freemantle, N., Gilbody, S., Hunter, R., Kendrick, T., Kessler, D., Mangin, D., King, M., Lanham, P., Moore, M., Nazareth, I., Wiles, N., Bacon, F., Bird, M., Brabyn, S., Burns, A., Clarke, C. S., … Lewis, G. (2021). Maintenance or Discontinuation of Antidepressants in Primary Care. New England Journal of Medicine, 385(14), 1257–1267. https://doi.org/10.1056/NEJMoa2106356
Wunderink L. Changing vistas of psychosis and antipsychotic drug dosing toward personalized management of antipsychotics in clinical practice. Psychiatr Rehabil J. Published online April 22, 2024. doi:10.1037/prj0000614