To reveal or not to reveal a diagnosis of Parkinson’s disease?

Opening up about a diagnosis of Parkinson’s disease is a personal and complicated decision. While some share the diagnosis immediately with friends, family, and colleagues, it’s common for people with Parkinson’s to conceal their condition, often for months or even years. Even actor Michael J. Fox waited seven years before revealing his diagnosis to the public.

My husband, Arman, was diagnosed with early-onset Parkinson’s disease in 2009 at age 38. We chose to keep the diagnosis private until his symptoms became severe enough that they were compromising his overall function.

To disclose his diagnosis, as I shared in a previous column, we slowly told close friends, family, and eventually Arman’s medical colleagues, as he’s a cardiologist. Several were not surprised by the disclosure and were relieved that it was nothing worse.

If you or a loved one are considering whether to share a Parkinson’s diagnosis, following are several things to keep in mind.

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Weighing the options

Just like any disease, Parkinson’s can be painfully difficult to accept. No one wants to hear the words, “You have a neurodegenerative disease with no known cure.”

Parkinson’s is generally diagnosed after other illnesses with similar symptoms have been ruled out. There’s no single confirmatory test for Parkinson’s, so it’s normal to question the validity of the diagnosis, which inevitably complicates acceptance. It can take a patient years to accept the condition, and they may not want to share it with the world until they’ve made peace with it and figured out how to cope with it themselves.

It can be uncomfortable to feel as though the world is feeling sorry for you. Hiding away forever can be tempting. Some patients choose to keep their diagnosis private because they don’t want to be a burden or be treated like a child. Others may hesitate to disclose because they don’t want to be defined by their illness.

Many unfortunate stigmas accompany Parkinson’s disease, including the misconception that patients are no longer competent, capable, or relevant. Because of this, many are apprehensive about disclosing their diagnosis because they fear losing their job and possibly their career. Typically, there’s great concern about how an employer will perceive the disease — especially for those with early-onset Parkinson’s, who may be just starting out in their career.

There are no rules for sharing a diagnosis. Since Parkinson’s is not easily hidden, it’ll likely cause physical changes that may be difficult to mask and will become obvious to others, especially family and close friends. Be realistic about what you can hide and what will be apparent to those around you. The Parkinson’s secret becomes increasingly difficult to keep.

Keeping the diagnosis private can make patients feel isolated, alone, and depressed. All of these feelings can increase their stress, which in turn can exacerbate symptoms and contribute to disease progression.

It’s also important to consider how your friends and family will feel if you choose not to tell them. Will they be concerned that something serious is wrong? Will they feel comfortable asking you about it?

Consider yourself and your needs as well. Will you miss out on needed support if you keep your diagnosis private? Will the stress of concealing it make your illness worse? Might it be a relief to open up and let family and friends be by your side?

No matter what decision you make about sharing your diagnosis, I hope it works out to be a good one for you. Remember, Parkinson’s doesn’t come with any road maps or instructions, so following your instincts is the best way to navigate this complicated territory.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.