Having a diagnosis of Huntington’s, whether or not you are currently experiencing symptoms, may mean that you worry about keeping or finding work.

Looking for work

At the stage of a job interview, it is important to remember that you only have to give information about a health issue if an employer asks you. You should answer all questions honestly, but you do not have to offer information if the question isn’t asked.

Most people feel they don’t want to voluntarily offer information about a health condition as they are worried that they might be treated differently. Also, in relation to Huntington’s, people are often concerned about telling others as there is so little awareness of the disease.

Managing at work and your rights

People often worry most about work if they are concerned that they are showing early symptoms. Each person will have a different relationship with their employer and their colleagues, and this will affect how they feel about sharing personal information. All employers, however must comply with the Equality Act 2010, which addresses unfair treatment and helps achieve equal opportunities in the workplace and in wider society.

If you decide the time is right to talk to your employer about having Huntington’s, it is worth thinking things through first. Consider how much information you are comfortable to disclose at this time, and what they most need to know.

If you are struggling to cope at work, and say so, then it might be difficult for them to see how they could help you. If, however, you give specific issues that are causing you problems, and come up with some possible solutions, this will be more constructive.

For example, if you are in a noisy office, with phones ringing all the time, emails constantly coming in and colleagues making requests, you may struggle with doing all these things at once. You could look at structuring your day differently, for example so you only get calls at certain times, only check your emails twice a day or move to a quieter area in the office. Perhaps your employer could support you to do this."

If you find you are exhausted by the time you get to work because your journey during rush hour is stressful, you could ask for more flexible working hours.

There are possible solutions to a number of issues and employers are usually happy to work through these to keep a good employee.

For support and advice in relation to work, the Brain Charity’s employment support service has useful information for both employees and employers. ACAS also runs a helpline and there is some information about Access to Work for people with a disability at www.gov.uk.

Your local Specialist Huntington’s Disease Adviser (SHDA) can also help you talk to your employer about your diagnosis and what it means for your employment.