Mental Health Care Provider Overview for Dystonia

It is not uncommon for some people with dystonia to also suffer with depression and/or anxiety. Knowing where to seek help can be overwhelming and sometimes a hindrance to getting help. To break down that barrier, DMRF spoke with Laurie Strawgate-Kanefsky, PhD to explain the various types of mental health providers and offer some critical first steps for those living with dystonia who may be facing these health concerns.

Dr. Strawgate-Kanefsky has a personal history with dystonia, and she’s been a mental health professional for decades. She’s the oldest of four sisters and is one of three who have the dystonia gene. While she’s not symptomatic, she knows the struggles of living with dystonia through her nephew who was diagnosed at age 7. Dr. Strawgate-Kanefsky has a master’s degree in social work from Columbia University and her doctorate from NYU. As a medical social worker, she helped dialysis and kidney transplant patients deal with the psycho-social side effects of chronic illness and medical trauma, very familiar territory to many with dystonia.

Whole Health Approach

Dr. Strawgate-Kanefsky is a big proponent of the whole health approach— treating patients’ physical well-being along with their mental health. “If you can support the patient’s mental health, they’re more likely to do what they need to do to address their dystonia symptoms,” she said.

In an ideal world, doctors would take the initial step to address a dystonia patient’s mental health by screening them during their regular appointments, asking them questions, and referring them to a mental health provider. Unfortunately, this isn’t always the case, and individuals with dystonia may need to initiate the process. With this in mind, Dr. Strawgate-Kanefsky offers a few tips dystonia patients can take to advocate for their own mental health.

Share your feelings and ask for help. “You need to communicate. You need to be open, and you need to share information,” she said. Whether you talk to a family member, a friend, or your doctor, you may need to be the one to first recognize that you need mental health assistance and ask for help.

Look for a mental health provider in a pain management department. Pain, a common problem for many with dystonia, may contribute to mental health concerns. Dr. Strawgate-Kanefsky says most teaching hospitals have pain management departments. She suggests asking your neurologist to refer you to a mental health professional in the pain management department because they specialize in dealing with chronic pain.

Mental health professionals may not know about dystonia but help them learn. Don’t expect therapists to know what dystonia is at first, but you can usually tell in your first consult if they seem open to learning and helping you with the challenges. “Once they know what it is and what the issues are, any competent therapist would be able to partner in the work that person needs to do,” Dr. Strawgate-Kanefsky said. The DMRF has a dystonia resource packet you can share with your mental health provider available on its website: dystonia-foundation.org under the tab Living With Dystonia.

Find a therapist you trust. Meeting with a mental health professional should feel comfortable and is an ongoing relationship that develops over time. “It’s all about the relationship with your therapist. If that person doesn’t feel right, find someone else,” she said.

Start with talk therapy. For dystonia patients, Dr. Strawgate-Kanefsky recommends starting with talk therapy first with a counselor, social worker, therapist, or psychologist. Although some psychiatrists offer talk therapy, they are more geared toward prescribing psychotropic medications. “Especially with dystonia, adding more drugs is probably not what you want to do first,” she said. However, if behavioral therapies don’t seem to be moving the needle, then medications prescribed by a mental health professional you trust may help. Approach the right type of mental health provider. 

There is currently a high demand for mental health assistance and a shortage of professionals in this post-pandemic era. Having a basic knowledge of various types of mental health professionals can help you narrow down options and avoid sitting on waiting lists with the wrong type.