To Tell or Not To Tell?

The choice to disclose an illness, newly diagnosed or not, to your employer is very much a personal one. Whichever you choose, fear of losing your job or being discriminated against can cause sleepless nights just when you need your rest more than ever.

Willeke Van Eeckhoutte
04 Sep 2014

When I first started experiencing MS symptoms, work was hectic because I was juggling different roles at once. Trying to stay at work, however, was even more challenging. I loved my job and tried my utmost to keep absences to a minimum. My main priority was involving my employer because I wanted to show them that I was still me, still able to do my job. 

Trigeminal neuralgia and severe fatigue made sure I was in and out of the office a lot. My colleagues understood the situation I was in, and when I had to be admitted to hospital 5 weeks before my diagnosis, they were there with me. 

In addition, the MS society sent me brochures on what MS is, how fatigue can impact people, and how to handle stress and MS at work. I decided to give these to my manager and HR department because we would be navigating the road of my illness together. It proved very beneficial. An occupational doctor came to my desk to see what adjustments could be made to make my working day easier to handle.

Eventually, I was allowed to work from home, something I would never have been allowed to do if I stayed quiet about my MS. Looking back now, it lead to the best and probably most productive time I ever had in employment. I was able to sleep at least 1h 30mins longer in the morning and I gained roughly 2 hours of otherwise commuting back home at night.

For my own emotional health, deciding to disclose meant that I could simply be myself at work. I had very painful bouts of trigeminal neuralgia and fatigue, and physically I would not have been able to hide those symptoms. On the contrary, I now had my colleagues support, as well as that of my employer.

Recent research show that people who disclose MS to an employer were more likely to remain in employment in year 3.

The 2004 Employment Equality Act safeguards anyone diagnosed with MS from the time of diagnosis against unfair treatment and discrimination in the workplace, regardless of having symptoms or not. In addition to this, an employer has to make “reasonable adjustments” to ensure that you’re not disadvantaged by certain arrangements or physical features of the workplace. 

Other adjustments in the Employment Act include:

  • The possibility to work from home
  • Transfer to another post of place of work
  • Flexible working hours
  • Make physical adjustments to furniture and/or tools you use
  • Make adjustments for easier access the workplace

Please don't forget to check out Willeke's blog Ireland, Multiple Sclerosis and Me if you want to read more.