The “DIY” Psychiatry Movement: A Potential Threat to Patient Welfare and Wellbeing

Hansa & Party/Adobestock

COMMENTARY

There has been a surge of attention in the popular media about patients with serious mental illness (SMIs) moving away from traditional psychiatric treatment as a result of dissatisfaction and disaffection with traditional care by mental health experts.¹ (See related article Deprescribing: Does the Term Belong in the Psychiatric Lexicon?) Proponents of a do-it-yourself (DIY) approach to managing one’s conditions without professional oversight frequently espouse disbelief that psychotropic medications ease suffering and save lives, claiming that they instead pose more harm than good. The public DIY discourse has included mutual aid platforms² and services³ offered by people with lived experience who encourage patients to self-educate and procure information from other people with lived experience—not from clinicians—turning to their peers not merely as a support but as a kind of ersatz management approach.

To date, there has been surprisingly little commentary or rebuttal from the patient, caregiver, and practitioner communities in response to the DIY movement, which does not necessarily reflect the views of all or even many people with lived experience. Thus, this collaborative response—coauthored by an individual with SMI lived experience (KP) and a clinical psychopharmacologist (JFG)— aims to provide insight about the merits and shortcomings of DIY mental health management as well as to offer guidance to patients and practitioners about strengthening their collaborative work and minimizing the risk for patient estrangement.

DIY: Born From Paternalistic Medicine

What is meritorious about the arguments raised in the DIY movement? Perhaps most importantly it validates and acknowledges the sentiments of patients who feel disenfranchised from their own care. For example, during KP’s initial 10 years of treatment, there was little if any discussion about diagnosis or medication options, treatment goals or rationales, risks, alternatives, or possible adverse medication consequences beyond a cursory review. Perhaps reflecting the experience of other individuals with SMIs, questions about treatment were essentially deflected, discouraged, dismissed, or reframed as proof of impaired insight about the nature or gravity of a clinical condition.

Nowadays, such paternalistic medicine⁴ has come under fire for posing ethical conflicts (eg, lack of informed consent). More enlightened thinking has led to the rejection of paternalism (as well as a redirected focus toward patient-centered outcomes research, eg, www.pcori.org). It has also given way to what some authors have called the “new age of patient autonomy.”⁵

Importantly, for perhaps many people with lived experience, the heritage of paternalistic medicine has left an indelible mark that undermines basic trust in both experts and mainstream treatment, laying a foundation for the DIY movement. Indeed, DIY approaches to mental health self-management carry forth an anti-paternalism message. It can: polarize patients and clinicians; reinforce stigma; rob people of a sense of hope and recovery through effective treatment; and capitalize on individuals’ fears of exploitation. The movement can play on patients’ insecurities, discontent, and feelings of injustice, utterly undermining any spirit of collaboration that otherwise defines the backbone of all good psychiatric treatment: the therapeutic alliance.

Here lies perhaps the most hazardous aspect of rejecting mainstream treatment in favor of a DIY approach: the potential for clinical worsening without professional supervision and oversight. Patients who take matters into their own hands because they are unhappy with their treatment run the risk of clinical deterioration, relapse, disability, displacement from their home environments, and suicide.

Largely absent from the DIY management approach is any suggestion that proper care involves a collaborative endeavor between patient and prescriber. The DIY mindset seems to assume that clinicians could not become stronger allies in the shared effort to manage SMIs and medication adverse events, combat stigma, and help patients strive toward recovery in the fullest sense.

Finding a Happy Medium

A potential compromise could combine mutual aid and peer support, such as that offered by much-needed peer specialists, while developing a strong collaborative relationship with a prescribing clinician. Moreover, the peer support community’s sense of empowerment could help patients appreciate the value of shared decision making and inspire them to pursue a treatment relationship in which their needs are heard, their concerns are addressed, and they are invested in the treatment approach.

For KP, strength and courage from peer support empowered her to persistently advocate for her concerns with her provider. This support ultimately led her to seek a new health care professional when her existing clinician refused her request to taper a medication that had marked adverse events. As a result of her proactive stance, she became more engaged and invested in her care, which set the stage for the path to recovery.^6,7

Similarly, it would greatly enhance anti-DIY sentiments if more clinicians adopted a recovery-oriented approach—one that prioritizes the patient’s desired quality of life as opposed to merely managing symptoms. This approach may require clinicians to take calculated risks to help patients achieve the lives they envision.

In KP’s situation, her current provider immediately addressed longstanding concerns that her previous clinician would not acknowledge or address. The positive outcomes were nearly immediate and, consequently, she has been thriving without relapse since 2016.

The Importance of Shared Decision Making

Shared decision-making remains an underutilized modality that significantly improves treatment adherence, outcomes, and patient satisfaction.⁸ It is a collaborative process in which the patient defines their treatment objectives, the clinician presents options based on their expertise and evidence-based medicine, and together they partner to determine the best course of action.

When patients feel heard and supported in shaping their care, they are more likely to positively receive the treatment that allows them to live their best lives, adhere to treatment, and experience greater satisfaction. Unfortunately, too often patients feel unheard—both by their providers and by families who defer entirely to clinical authority. This dynamic can strain relationships between caregivers and patients, ultimately hindering recovery. And, although current attention is focused on deprescribing, similar attention should be paid to decisions surrounding prescribing agents. Shared decision-making benefits both strategies.

Although patients and medical professionals are often siloed, integrating lived experience into medical research is becoming more common. This approach leads to more relevant studies, improved outcomes, and greater patient engagement and empowerment, highlighting the power of collaboration in health care.

The Allure and Downfall of DIY

The idea of purposefully shunning medication can project a kind of anti-establishmentarian allure. In some circles, deliberately foregoing medication for an SMI can be perceived as portraying resilience and an indomitable spirit (ie, like riding a motorcycle without a helmet). However, that mindset also can reinforce denial and may prevent individuals from considering medication that could alleviate their symptoms and distress.

The DIY approach also runs the risk of promoting medication shaming—making patients feel judged, guilty, or criticized about taking medicines. This, in turn, can drive feelings of failure and foster alienation from treatment, as opposed to the feelings of strength and power over one’s situation when getting proper clinical support. The resulting guilt and shame may also drive a sense of secrecy and fear of harsh reprisals from caregivers or judgmentalism from providers. Overcoming these challenges can be formidable, especially for people who have endured long-term distress from persistent symptoms or disabilities.

If the patient, caregiver, and clinician communities remain silent about the double-edged sword of DIY approaches, that complicity could have many negative consequences: increased widespread deterioration of the doctor-patient relationship (not just in psychiatry, but perhaps in other areas of health care as well); and increased polarization and divisiveness within the mental health community. It could also popularize the abandonment of appropriate care and add to the already alarming escalation of suicide completion rates.⁹

Moreover, the medication journey for most people with lived experience is highly individualized and vulnerable to misinformation or influential contrarians. Sole reliance on the lived experience of peers, who have their own unique circumstances, incurs potential risk to patient safety and well-being.

Concluding Thoughts

Given these issues and our collaborative care experiences, we offer a list of thoughts and suggestions for fostering a more collaborative approach between patients and their clinicians to use as a guide (Table).

Table. Suggestions for Fostering Better Outcomes

True collaboration between a patient and their clinician is—or should be—a covenant whose sanctity becomes the cornerstone of effective treatment. The growing specter of the DIY movement should be a wake-up call to stakeholders about threats to the integrity of the therapeutic alliance and the need for all parties to work together to safeguard that collaboration.

Ms Ponte is a mental health advocate, author, lived experience recovery coach, and thought leader happily living in recovery from severe bipolar I disorder with psychosis. Dr Goldberg is a clinical professor of psychiatry at The Icahn School of Medicine at Mount Sinai in New York, NY and president of the American Society of Clinical Psychopharmacology.

References

1. Barry E. Leading a Movement Away From Psychiatric Medication. The New York Times. March 24, 2025. Accessed April 7, 2025. https://www.nytimes.com/2025/03/17/health/laura-delano-psychiatric-meds.html

2. Your life. Your story. You choose. The Inner Compass. Accessed April 7, 2025. https://www.theinnercompass.org

3. Delano L. Psychiatric treatment can be limiting. Are you ready to forge a different path? Accessed April 7, 2025. https://www.lauradelano.com/fortify-focus

4. De M. Defining paternalism in medicine. Virtual Mentor. 2004;6(2): virtualmentor.2004.6.2.fred1-0402.

5. Kilbride MK, Joffe S. The new age of patient autonomy: implications for the patient-physician relationship. JAMA. 2018;320(19):1973-1974.

6. Ponte K, Goncalves I. Loving Someone with a Serious Mental Illness: Caring for Your Loved One and Yourself on the Journey to Mental Health Recovery. New Harbinger Publications;2025.

7. Ponte K. Your Mental Health Recovery Workbook. Trigger Publishing; 2023

8. Tian CY, Wong E L-Y, Qiu H, et al. Patient experience and satisfaction with shared decision-making: a cross-sectional study. Patient Educ Couns. 2024;129:108410.

9. Suicide Data and Statistics. Centers for Disease Control and Prevention. March 26, 2025. Accessed April 11, 2025. www.cdc.gov/suicide/facts/data.html