Many people of all ages and career paths continue to work after being diagnosed with ataxia. However, it may seem particularly challenging to navigate the potential difficulties for yourself or with your employer when you’re young and just at the start of your career or in your first job out of school.

Symptoms of ataxia can make working in many environments difficult, and people with all types of disabilities share the same rights as other job-seekers and employees, so it’s important to remember that employers must follow the rules outlined under the Disability Discrimination Act (DDA) which include all aspects of employment from recruitment to ending employment, for example;

  • arrangements for recruiting and selecting new staff
  • terms and conditions of employment, including pay and benefits
  • promotion, transfer or training opportunities
  • work placement opportunities
  • disciplinary procedures
  • performance management and attendance procedures
  • dismissal or redundancy
  • occupational pensions
  • the way that the work is arranged and performed
  • the physical features of an employer’s premises

You can find out plenty of information about laws in this area by visiting: https://www.gov.uk/rights-disabled-person/employment

You may already be employed when you are diagnosed, or you may be job-hunting when you’ve already received a diagnosis of ataxia. These situations raise different issues. If you already have a job you may feel conflicted about whether to tell your employer straight away, and how to tell them when you do. This all depends on what sort of job you have, and some lines of work will now be off limits due to a diagnosis of ataxia (for example; operating heavy machinery or the armed forces),  but that doesn’t mean you can’t have an enjoyable and fulfilling career. However, it’s also important not to feel pressure to push yourself in ways you’re not comfortable with, and to not over-exert yourself at work, or feel the pressure to work if you feel unable for any reason.

You’ll likely find your employer or potential employer to be understanding and sympathetic to your needs, but they are unlikely to have any knowledge of ataxia and may be ill-informed about your changing requirements as a result. If you’re anxious about informing an employer, try and be as prepared for any potential questions as possible and try to help them understand what ataxia is and how it affects you. If you don’t want to tell them yourself – a colleague or trade-union representative can do so on your behalf. You might be concerned about the costs of making adjustments, take a look at ‘Access to Work’.

This is a government-funded scheme which can help pay for the equipment or support you need. It can also contribute to the cost of getting to work if you can’t use trains or buses.

In short, it’s important to know your rights at work and know that you have the right to expect certain things from an employer, but also to keep in mind that if you work and how much you work is completely up to you.