The Patient-Active Concept

A person who sees him or herself as a “Patient-Active” is someone who considers himself part of the fight for a meaningful life in spite of having a disorder.

Being a "Patient-Active" is about feeling and acting empowered. Patient-Active is not just a descriptive term about how you choose to act as a person with dystonia. A Patient-Active is an actual person who opts for being more than a "dystonia patient." It is your active participation in the choices you and your healthcare team make about treatment that can improve your quality of life and perhaps enhance the possibility of improvement. Choosing to be a Patient-Active is not one monumental decision, but rather a series of small incremental choices that help you regain a sense of control over your treatment and in your life in general.

There is no one way to be a Patient-Active. You decide what is best for you. Being a Patient-Active means that you take specific steps to learn to make informed decisions about your dystonia and its treatment as well as the psychological, emotional, social, and spiritual issues that impact your health and well being.

Research has shown that there are three particularly challenging psychological and emotional stressors that people with chronic disorders such as dystonia face: isolation, loss of control, and loss of hope.

A meaningful way to reduce these stressors is to participate—along with loved ones and other people with dystonia—in support groups, workshops and symposiums, stress management courses, and advocacy programs such as the multiple volunteer opportunities offered through the DMRF.

People with dystonia who actively seek a fulfilling life in spite of dystonia will improve the quality of their life and may enhance their overall well being.

Information provided by Karen K. Ross, PhD, a clinical psychologist and family therapist in Los Angeles.  The Patient-Active concept was originally developed by the Wellness Community, which is a support program for people with cancer.

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