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It’s Time to Share Your Secret about Parkinson’s

Everybody's got a secret, Sonny
Something they just can't face
Some folks spend their whole lives trying to keep it
They carry it with them every step that they take
'Till some day they just cut it loose
Cut it loose or let it drag 'em down…

From: "Darkness On the Edge of Town" by Bruce Springsteen

When I was diagnosed with Parkinson’s Disease (PD) 16 years ago, at first I only told my husband, mother, brothers and sisters. Throughout the years, I gradually told a few more close friends, colleagues and a few relatives.  I didn’t want to be pitied, judged or people to lower their expectations of me. I didn’t want people to scrutinize me and look for my worsening PD symptoms.

I scheduled my neurology appointments at 7:30 AM before work so that I could avoid the shaky folks in the waiting room. When my hand shook at work, I would put it in my pocket. When people would ask me about illness, my response was frequently "I don't want to talk about it."

When my PD meds were working, denial was my motto. When I often passed as healthy, or so I thought, my magical thinking went like this: If I don’t talk and think about PD, then I don’t really have it. So I pretended.

The problem with denial was that it required secrecy. For nearly a decade, I kept my PD shrouded in secrecy. It was my secret.

By the time that PD had progressed to the point that I required DBS surgery, I found it necessary to disclose what I could no longer conceal. Concealment had become as stressful as the disease itself. When I overheard rumors that I had multiple sclerosis, it was time to come clean. It was time to be honest.

When PD was no longer a taboo subject for me, reveal instead of conceal became my new philosophy. And what a relief it has been for me to live a life of openness without secrets.

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