What are the key conversations to have around working after a Parkinson’s diagnosis? While processing your diagnosis on a personal level is one thing, approaching it from a professional perspective can be a different, and sometimes daunting, journey.
Some people tell their boss or colleagues straightaway, others take time to process the news before they are ready to share it. You can read more about people with Parkinson’s real-life experiences of navigating the workplace in our workplace campaign article ‘What is it like working as a person with Parkinson’s’.
When thinking about when and how to discuss your diagnosis at work, and how it might affect your work itself, our advice is to take your time and gather the facts. Being armed with information – like what you are entitled to, and any helpful accommodations – can help you approach these conversations with confidence and build a clear idea of what you would like to see happen.
Working with Parkinson’s: consider your options
While a good employer will be committed to supporting you at work, sadly not all are as well-informed or proactive as they could be.
As person with Parkinson’s and member of Parkinson’s Europe’s Visibility and Awareness Steering Group Wendy van Wijk-Lugthart points out, there are people with Parkinson’s who do wish to work, but “cannot work because they do not get the chance. And in my view there should be more help for people who want to work, because it can make a big difference for your wellbeing. And some people need work for the money. Working gives you social contact, and […] you get the feeling that you are still important and part of the society.”
Alternatively, you may feel that the best option for you is to stop working at this point. Fellow steering group member, and person with Parkinson’s Paqui Ruiz notes: “We must be very careful with statements such as ‘people with Parkinson’s can work’ because there are those who can and those who cannot. This could undermine the rights that have been achieved in terms of disability and economic dependence.”
Know your rights
However you are feeling about your work, it helps to know your rights so you can make informed choices. Including what legislation covers people with disabilities across Europe, and what to do if you face discrimination. Finding out how your country has implemented EU legislation, and any additional nationwide protections and benefits, may help you feel more confident about discussing your diagnosis at work. You can find out more about individual European countries’ workplace protection legislation.
While it is not strictly your responsibility as an employee, it might also be helpful to look at what government support and subsidies are available to support you and your employer. Being clued up on such support might give you the tools to reassure an employer that is fearful or hesitant about the implications of hiring employees with Parkinson’s.
Below are some points to consider, discussion prompts, and suggested questions to help you navigate key conversations around working as a person with Parkinson’s. These points are not comprehensive, and you may find not all apply to you and your situation. You may find it helpful to jot down your thoughts and questions beforehand, and take notes during any conversations to help you reflect and process key points later.
How to talk about Parkinson’s and work with…
A partner/loved one:
To prepare for any conversations you have in the workplace, it may feel helpful to talk things through with a loved one beforehand. Take time to identify how you are finding working and any changes you would like to see.
Consider discussing:
- How is work making you feel, and how do your Parkinson’s symptoms affect this?
- How do you feel about discussing this with your workplace, and what do you hope to achieve?
- What would your ideal work, or retirement, set-up look like? What are the pros and cons of that?
- What reasonable accommodations or adjustments might you wish to request? Examples include:
- Flexible working hours
- Reduced travel
- Environmental adjustments
- Special equipment or technology
- What financial implications might there be to changing to a new role, reducing your hours, or leaving the workplace altogether? How would that affect you and your loved ones?
A human resources (HR) department representative:
Having a confidential chat with your HR representative may be a useful first point of contact at work. Your company should abide by EU and national legislation, but it may also help to understand more about any additional benefits and support your company can offer.
Consider discussing:
- Do you have to tell your line manager about your diagnosis?
- What support is available if you feel anxious about doing this?
- In addition to EU legislation, what national legislation are you protected by?
- Does your company offer any enhanced support or benefits on top of this, such as income protection insurance?
- [After explaining what reasonable accommodation you feel you would require] would these kinds of adjustments and reasonable accommodations be something that could be implemented?
- What is the process for requesting reasonable accommodations?
Your manager:
When you are ready to discuss your needs with your manager, it is important to have a good idea of where you need any additional support or adjustment. It may also be useful to gauge their understanding of the condition early on, to avoid any potential misconceptions before you discuss what could be done to better accommodate you.
Consider discussing:
- How much do you know about Parkinson’s in general?
- Can I tell you how it affects me at work?
- Can we discuss what changes and accommodations we can introduce to help me work more comfortably and effectively?
- Can I share some suggestions?
- Can we discuss if and how I want to share this with any other colleagues?
Your colleagues:
Some people prefer to keep their diagnosis as private as possible, to maintain a line between their working and personal life. While others can find it helpful to share their diagnosis, or symptoms, with their co-workers, with the aim of identifying ways they can work more effectively together.
Consider discussing:
- How much do you know about Parkinson’s in general?
- Can I tell you how it affects me at work?
- Here are some things that would make the workplace more comfortable for me…
Your contract provider/commissioner (if you are self-employed or freelance)
If you are self-employed, you may have other factors to consider. For example, your relationships with regular clients, ad hoc pieces of work, fixed-term contracts and so on. If and when you share your diagnosis with clients is entirely up to you.
Whether signing up to take on new work, or discussing your working conditions for existing commitments, these questions may be helpful.
Consider discussing:
- What are your expectations from me in terms of when and how this work is delivered? Is there any flexibility on this if needed?
- My ideal working conditions include (i.e. frequent rest breaks, long lead times, working from home and avoiding travel, particular environmental needs). Are you able to accommodate these now or in the future?
Yourself:
A Parkinson’s diagnosis can involve changing how you think and feel about your role as a professional person. And change can be hard.
In the midst of navigating any of the above conversations around working as a person with Parkinson’s, it is important to check in with yourself. This may feel less like a conversation and more like affirmations to remember.
Consider reminding yourself:
- You are a valuable human being, regardless of whether you are able to work – paid or unpaid – or not. Your value is not dependent on your output or productivity levels.
- Everyone has rights within the workplace, and that includes people with Parkinson’s. Although accepting your changing needs can take time, you have as much right to be accommodated as anyone else.
- Like many people with Parkinson’s, you may have developed some extraordinary skills on your journey. Creativity, problem-solving, tenacity to name a few. Don’t lose sight of all the valuable experience and qualities you bring to the table. Be proud of what you have achieved so far, and focus on building a bright future – even if that looks different to the future you imagined before diagnosis.
- Ask yourself about the practical issues involved in remaining or leaving your place of work. But also factor in what you want, and what factors are most important in supporting you to live well with Parkinson’s overall. For some people, remaining in work feels key to their mental health and wellbeing. To others, changing roles or retiring is the path to a happier balance. Take time to think about your options.
- And remember – if and when you do decide to leave your workplace, it is the job you are leaving behind. Your own unique skills, qualifications and experience will move forward with you.
With many thanks to Haydn Hammersley, Social Policy Coordinator at the European Disability Forum, and Anna Murray, Newly Diagnosed Programme Lead at Parkinson’s UK for kindly reviewing this article.
