How Dystonia Support Groups Can Change Your Life

How does a diagnosis of dystonia change your life?

Dystonia is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurological features.

The diagnosis can leave you emotionally charged, in need of an outlet for these emotions.

Whether you are experiencing an emotional reaction yourself or coping with a loved one’s illness, you may benefit from participating in a support group.

What can you expect from a support group?

The Mid-Michigan Dystonia Support Group states that the primary goal of a support group is to bring patients, family, friends, and others together to understand the emotional needs of dystonia patients and the psychological effects of the disorder.

Why do support groups get a bad rap?

These two little words can create a mixed bag of feelings. Why?

No one wants to need a support group.

This need makes us feel:

  • insufficient,
  • dependent,
  • vulnerable,
  • raw,
  • and exposed.

But those words can also be used to instill HOPE.

Why join a support group?

Support groups offer a ton of great things:

  • Connecting with others with similar experiences, knowing, perhaps for the first time, that you are not alone on the journey to recovery
  • Gaining practical skills and advice for living with dystonia, such as
    • what to expect from different medications,
    • how to adhere to a treatment plan,
    • and how to manage side effects
  • Learning new coping strategies from others with firsthand experience
  • Finding a safe place to “vent” about frustrations (like insurance or side effects)
  • Discussing strategies for confronting stigma at home, at work, and in the community
  • Gaining motivation to stick with a treatment plan

Where can I find dystonia support?

Are you severely depressed? Do you feel in a crisis?


Since you’re reading this, it is likely that your pain of living with dystonia or the caring for someone with dystonia has become greater than the fear of going to a support group.

So hang in there: You have options.

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