When should I tell my employer?

The decision on when to tell your employer – also known as disclosure - is a very personal one. You may need some time to adjust to your diagnosis before you tell anyone at work, or you may feel more comfortable telling them sooner rather than later. There is no right or wrong time; it is up to you to decide what is right for you. You may find it helpful to consider the following factors when considering your decision:

the relationship you have with your employer – if it’s a good relationship you may feel comfortable telling them early on
the nature, extent and progression of your symptoms. For example fatigue, poor handwriting, tremor, or difficulty with gait or balance may be detrimental to your ability to perform in a specific job
the nature of your job and your ability to continue it safely
the stage of your career and your financial commitments and family responsibilities
the importance to you psychologically of working. If work brings self-esteem and fulfilment you may be more reluctant to stop.

A personal perspective

Carolin Hübner, Spain

“My experience as a freelance translator was tremendously positive. From the moment I told both agencies I worked with I received wonderful feedback. They always ask how I feel and if I can do the work, making sure they don’t give me the urgent translations. With this support I have been able to reduce my hours but continue to work. Financially the decision to cut my hours was hard but I had to weigh things up.

“I know others who have not had such fortunate experiences with their employers. I think a larger company can help more in terms of flexibility and adapting to changing needs than a small one, but I have heard of many people who have been given a period of some months to see if things could be made to work out, although they often decide to give up work within a year of telling their bosses.

“Whatever your final decision, you can be sure that others notice that something is ‘wrong’ with you much earlier than you would ever have thought!”

If you have to cover up symptoms you may find that this becomes stressful and stress can exacerbate Parkinson’s. However well you may think you are hiding your symptoms, they might still be noticed.

Understandably, some feel apprehensive about telling people for fear of a negative response or perhaps loss of entitlements, promotion, or their job. But it can be helpful to tell your employer early on as their support and that of your colleagues can make continuing with work much easier and they may be able to make adjustments to help you.

In many countries it is illegal for employers to discriminate against people with disabilities so do check your rights with your local government office or employment agency. Entitlements and eligibility criteria for any state benefits vary from country to country so always check your options and rights before making any decisions.

Did you know?

The American President Theodore Roosevelt (1858 – 1919) once said, “Far and away the best prize that life has to offer is the chance to work hard at work worth doing.”