Medication-Induced Movement Disorders (MIMDs) - Finding Advocates and Addressing Stigma

Experiencing mental illness is highly stigmatized in our society, and this is worsened by media coverage that associates mental illness with violence. Research has shown that messages emphasizing violence by people with mental illness increase public stigma. Abnormal movements and other adverse effects of antipsychotic medications may attract unwanted attention, fear or disgust from other people, potentially contributing to self-stigma. This can result in patients having decreased self-esteem, withdrawing from social interactions, and/or choosing to discontinue treatment.

Clinicians must strive to make their practices welcoming by being able to discuss stigma openly, without judgement, and work to boost patients' sense of self-worth and self-efficacy. For instance, a provider might say "I understand other people may see movement side effects as unusual, but the side effect does not reflect your worth or identity as a person." Research suggests that explicit acknowledgement of stigma in clinical settings and patient interactions can help with building or strengthening physician-patient trust and mitigate the harmful effects of stigma.

Clinicians must also train staff in the practice to be welcoming and non-judgmental. Because provider language matters, clinicians and staff should use non-stigmatizing, person-first, respectful language, when speaking to or writing about a patient. For example, using terms such as "a person with schizophrenia" or "experiencing symptoms of Parkinsonism." Health professionals should speak in a straightforward, neutral, and respectful manner as a way to build trust with their patients. Research has also shown the use of negative or stigmatizing language or attitudes could potentially transmit bias and affect the quality of care that patients receive.

Clinicians should also proactively connect individuals who feel stigmatized to external advocacy or peer-led resources. Peer-led interventions have been shown to reduce self-stigma, internalized shame, and stigma pressure, while promoting empowerment and recovery. These will differ by region, and it is worthwhile for clinicians to become familiar with what is available locally. Examples of resources include:

  • 988 Suicide & Crisis Lifeline connects individuals to trained crisis counselors 24/7 who can help anyone thinking about suicide, struggling with substance use, or experiencing a mental health crisis or any other kind of emotional distress. Family or friends can also call, text or chat 988 if they are worried about someone they care about who may need crisis support. 988 is also a resource for individuals who are not in crisis, but who are looking for mental health or mental wellness services.
  • YS Be Well website (bewell.ny.gov) is a fantastic resource to learn about self-care, building resilience, and helping your community.
  • The National Alliance on Mental Illness (NAMI) runs regional in-person or virtual support groups. Local NAMI Affiliates can be found here: NAMI Affiliates in New York (https://naminys.org/). The NAMI website has many other resources and information clinicians can give their patients to help them feel more empowered, including specific materials on tardive dyskinesia.
  • Club Houses are peer-led and focused welcoming environments that promote community and interpersonal connections and help individuals achieve their life goals. Club houses are designed for people with serious mental illness and fight stigma by promoting a sense of belonging. There are Club Houses throughout NYS and the best way to locate them is by calling 988 or searching for "Psychosocial Club" in the OMH Mental Health Program Directory. The Directory can also be used to find other local peer support services that may be helpful. Find a Mental Health Program (omh.ny.gov)
  • Patients, families, or clinicians can call their local OMH Field Office and speak with the Regional Advocacy Specialist for information on peer and advocacy resources in the region. OMH Field Offices (omh.ny.gov)
  • The National Organization for Tardive Dyskinesia has virtual support groups. Information can be found here: Virtual TD Support Groups (tdhelp.org).
  • HeyPeers is an online peer support community where individuals can find support groups, 1:1 coaching, and private chatrooms on a variety of issues.
  • PatientsLikeMe is a membership-based platform that allows individuals to form communities around shared health problems. It has a tardive dyskinesia group with over 200 members.