How to Protect Those on the Dystonia Front Line

When I was young, my grandfather delivered coal. And when I asked, “How much coal did you deliver today, Papa?” He always replied, “A shit ton!”

That was Papa’s favorite unit of measurement. He applied it to everything needing to be quantified: Coal. Raked leaves. Amount of money Grandma spent at bingo.

“A shit ton,” and it worked.

And as I read the Noel Valero’s blog on Dystonia’s Collateral Damage, I became acutely aware of the reality he shares:

“As with any chronic disease, the immediate family and personal relationships are in the front lines and the first to suffer damage.”

So, how much does a dystonia diagnosis change your life? And change for all those who share in that life?

A shit ton! (Kudos to you, Papa, for your depths and breadths still apply.)

More than Food for Thought

A diagnosis for a disease doesn’t just change your health status.

Any diagnosis–including dystonia–can be as overwhelming for your family members and friends as it is for you, possibly changing your relationships in unexpected ways.

You can expect that the roles, responsibilities, and priorities you are familiar with in a marriage or long-term partnership may shift after a diagnosis and continue to change throughout treatment.

Think about it:

  • Spouses and Partners: Facing the challenge of a chronic disease may strengthen a relationship and commitment. For others, especially for those that struggled before the diagnosis, the stress may create new problems or worsen existing problems.
  • Roles/Changing Roles: A person who has always been in charge or acted as the caregiver may have trouble accepting a more dependent role. While a person who has not served in those roles may struggle to take charge and provide care.
  • Responsibilities: In most relationships, each partner is responsible for specific chores. One may do the cooking and cleaning; the other may do the yard-work and pay the bills. If the disease or the treatment leaves one unable to perform the usual tasks, then those responsibilities rest on one person getting the job done.
  • Needs: Because physical and emotional needs change frequently as a couple copes with a chronic disease, it is important for both partners to communicate their needs.
  • Future Plans: A chronic disease can change the hopes and dreams that couples share. Plans for retirement, traveling, and parenthood may change – leading to a horde of emotional challenges and conversations.

Noel Valero’s Message

Sometimes, the complex feelings and lifestyle changes caused by dystonia and its treatment become as overwhelming for others in your life as they are for you.

Talk with partners, children, and friends and family.

Express your needs to those close to you; it can help avoid misunderstandings that stress your relationships.

Minimize the collateral damage.


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