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Got Parkinson? What do you tell your boss?

Young people informing their boss and colleagues about their Young Onset Parkinson Disease diagnostic
Young people talking to their boss and colleagues about their Young Onset Parkinson Disease diagnostic

I remember when I was diagnosed with Young Onset Parkinson Disease, I was 28 and I was working in Marketing in a American company. My career was taking a great momentum, until I suddenly discovered I had Parkinson. At the time, the only symptom I had was stiffness in my right hand & arm, which everybody including myself were blaming stress for it.

Once I got my diagnosis from a very reputable neurologist, specialized in movement disorders, I needed to talk to my manager and a couple of co-workers whom I trusted. I couldn’t keep it for me alone!

It was such a relief to tell them about my diagnosis because it helped me:

1. Being true to myself and to others

2. Accept my diagnosis easier

3. Have empathy from my manager and co-workers

4. Understand that my life and my career will not stop because I HAVE PARKINSON.

Determining when to tell your employer and co-workers (known as disclosure) about your diagnosis is a highly personal decision that should be made solely by you. You might need some time to adjust to your diagnosis before telling anyone at work, or you might feel more comfortable telling them right away. There is no such thing as a good or bad time; it is up to you to decide what is best for you. What is important is that you plan what you want to say.

If you are considering when to notify your employer, consider the following factors:

1. About your work environment:

  • The nature of your relationship with them: If you have a good relationship with them, you may feel comfortable telling them early on.

  • Your symptoms' nature, extent, and progression: For example, fatigue, poor handwriting, tremor, or gait or balance issues may make it difficult to perform some of your responsibilities.

  • The nature of your job and your ability to carry it out safely: If your Parkinson's disease poses a risk to your or another employee's health and safety, you should notify your employer.

  • Your career stage, financial commitments, and family responsibilities

  • The psychological significance of working for you: If your job gives you self-esteem and fulfilment, you may be less willing to quit.

2. About your symptoms:

If your symptoms are not particularly noticeable, you may choose to delay telling anyone at work. However, if you must conceal them, you may find this stressful, and stress can exacerbate some Parkinson's symptoms. Even if you think you're hiding symptoms well, they may be noticed, and others may draw incorrect conclusions if you don't explain.

3. About your career plan:

You may understandably be concerned about telling people for fear of receiving a negative response or losing entitlements, promotion opportunities, or your job. However, informing your employer and co-workers early on can be beneficial because their support can make continuing to work much easier.

4. About your co-workers’ reactions:

  • If you decide to say something, think about what information you want to share ahead of time - you only need to provide as much detail as you want. You will retain control over what you share or withhold for the time being if you plan ahead. It is also a good idea to consider how your colleagues will react and how you will respond to the obvious questions they will ask. If you tell your manager but do not want to tell your co-workers, ask your manager if they will share information on your behalf.

  • You may also find that your coworkers ask you questions about your condition; if you can provide them with information, they will be able to better understand your condition and support you at work.

5. About being referred to a work doctor/ therapist:

  • When you inform your employer that you have Parkinson's disease, you may be referred to a doctor or an occupational therapist who specializes in assisting employees with long-term health issues. They will assess how your condition affects your ability to perform your job and will make recommendations to the organization to make your role easier to perform.

  • It is critical that you communicate freely with any doctor or occupational therapist so that they can fully understand your job and your condition and make recommendations.

6. About your disability-related rights:

  • The Equality Act of 2010 (which incorporates the previous Disability Discrimination Act of 1995) works to protect people with disabilities from discrimination, including workplace discrimination.

  • In the United Kingdom, a disability is defined as "a physical or mental impairment that has a "substantial" and "long-term" negative impact on your ability to perform normal daily activities."

  • The Equality Act 2010 does not apply in Northern Ireland, but the Disability Discrimination Act 1995 remains in force.

  • If you meet the definition of a person with a disability, you are protected from being treated unfairly because of your disability; the law is in place to ensure that you can continue working, and organizations are required by law to make reasonable adjustments for you.

If you are an active person and you’ve been diagnosed with Young Onset Parkinson Disease, share with me how you informed your employers and/or co-workers about your conditions. I’ll be thrilled to know.


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Robin James Smith
Robin James Smith

This is a great subject! When I was diagnosed in August last year, I told my boss the following day with full disclosure. I was then latched in to Human Resources and referred to an Occupational Therapist for an assessment. The assessment was uninspiring; they did not understand my condition at all and had a set of stock questions that did not touch the impacts of PD (I fed that back to HR) but the way the company has responded has been marvellous. They have gone out of their way to listen to me and and understand my situation. They have been kind and supportive and I know that they will continue to do so. I suggested that we have…

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