Why my diagnosis is not a secret

To disclose or not to disclose? After they’ve heard, “You have young-onset Parkinson’s disease,” many people wonder: Should I tell my employer? What do I say to friends and family?

There isn’t one correct answer. You get to choose what’s right for you.

My diagnosis took nearly six years. Most people who were close to me at the time—including colleagues and clients—knew something was physically wrong and I was searching for answers.

By the time I was diagnosed, the people in my office had for months watched me stand during meetings because I hurt too much to sit; watched me juggle client work and medical appointments—some weeks I had an appointment every day; and supported me through a medical leave and then a hospitalization.

When I heard, “It’s highly likely you have young-onset Parkinson’s disease,” after 20 minutes with a neurologist who connected all my symptoms in a way no one else had, I didn’t go back to work that day, even though I had taken pride in not taking sick days.

I had gone to the neurologist alone. I went home and handed my appointment paperwork to my husband. That’s how I told him.

I called my parents and my sister and read them the paperwork.

It never occurred to me not to tell family.

I told my boss the next day. We agreed not to share “maybe” with the rest of the office. When my diagnosis was confirmed two weeks later, I made an announcement at staff meeting.

My professional team had been with me through my entire diagnosis journey. I took a fleeting glance at Parkinson’s websites that spoke about disclosing and not disclosing to an employer, but I didn’t seriously consider not sharing “the answer” with my team.

Five years later I was laid off from that job, for reasons that have nothing to do with Parkinson’s.

I job searched. I didn’t interview a lot, but when I did, I wondered what they saw. Should I have acknowledged I have a tremor, like I did in presentations (“You may notice I have a tremor; please don’t be concerned about that.” Period). Or would that just raise more questions? If I did choose to talk about my diagnosis, when was the right time?

About six months later, I accepted a temporary contract. I decided because it was temporary, they didn’t need to know I had Parkinson’s. What I learned is, for me, the stress of trying to “act normal” is worse than disclosing.

In my next professional opportunity, I learned there could be some benefit to checking the “I have a disability” box, and I did so for the first time.

So, I usually don’t announce my diagnosis upon introduction, but it’s not a secret. I tell colleagues and clients I work with regularly. Sometimes I have a direct conversation about it and sometimes I wait for the right moment.

Family and friends know, and I’m sure they talk amongst themselves. (Miranda Lambert’s song Famous in a Small Town is true for me: “Every last one, route one, rural heart’s got a story to tell … Every grandma, in-law, ex-girlfriend maybe knows it just a little too well …”)

Obviously anybody who does an internet search on my name will find what I’ve written about my Parkinson’s journey.

I’m fortunate to have professional teams that support me and provide the minor accommodations I need. I usually just ask for a plan that will set me up for success. I’m not sure I’ve ever used the word accommodation in those conversations.

A simple example is asking someone else to advance my presentation slides. This is about minimizing what might be affected by my tremor, though I don’t even need to say that. I just need to ask someone to support me during my presentation. Anyone could ask for that support for a number of reasons.

I haven’t gotten bogged down with employment law, disability law, and legal advice because I haven’t felt I needed to. My experience may be different than yours.

I know people with Parkinson’s who work and chose to disclose to their employers. I know of people who work and chose not to disclose. I know of people who disclosed and subsequently lost their jobs.

I know of people who chose to stop working because of their symptoms and I know of people who feel like they were forced to stop working because of their symptoms.

(If you want more resources about continuing to work with Parkinson’s disease, start with this article from American Parkinson’s Disease Association.)

I also know of people with chronic illness who forged an entrepreneurial path that works for them. They provide their own accommodations.

Again, you get to choose what’s right for you, and what’s possible might surprise you.

Want more about living well with young-onset Parkinson’s disease? Join the YOPD Ladies Live Large mailing list and get a free anti-apathy worksheet.

Photo by RODNAE Productions from Pexels