“It’s all in your head.”
I dare say these are words that many people living with a rare disease, including dystonia, have heard. It’s absolutely unfair, aggravating, heartbreaking, maddening. I could go on. These are words that people battling health issues should never have to hear. Still, it never ceases to amaze me how people respond.
Not with acceptance, but with action. Not with resignation, but with passion. Digging deep, pursuing answers, fighting. According to an article in The Gazette newspaper in Cedar Rapids, Iowa, that’s what one woman is doing. Consider Sheila Williams, a mother and former veterinary technician, who is fighting dystonia, a very rare and still mysterious neurological disorder.
Dystonia causes pain and muscle contractions. Where and how the disorder manifests differs by person—where and how it manifests within each person can also differ. Something else that’s hard to pin down? The cause.
For Sheila, the condition gradually took away her ability to speak. This led to the loss of her job, but she couldn’t qualify for disability. Meanwhile, doctors kept repeating those words.
“It’s in your head.”
Sheila did not give up. She would fight for answers, and it would take years, but she finally received a diagnosis: generalized, spasmodic and cervical dystonia.
Her symptoms continue to grow worse, but Sheila continues to fight. She won’t her symptoms stop her from living her life, nor will she stop doing all she can to raise awareness around the disorder.
Will you join her?