MS: Coming Out at Work
It’s natural that we all approach the big reveal of our MS diagnosis to others in our own way, at our own time. For me, I immediately let my family know because they already knew something different was going on with my body. It was hard for them to ignore that I needed to find a restroom every hour, that loud crowds and noises (even family gatherings) made me jumpy and on edge, and I no longer had the stamina to keep going and going. Although hearing I have MS was not a high point, it was good to be able to supply an explanation as to why I now walked funny, experienced foot drop, and couldn’t keep up with the pace of others.
Sharing the news of my MS diagnosis at work
Keeping this news from my coworkers was not a concern, either. Our former President (who still works there) was diagnosed with MS almost 30 years ago and he immediately let everyone know about his disease – he wanted to be sure everyone knew as he staggered down the hallways that he was not drunk and instead had MS. His coming out had laid the groundwork for me and so many others who work there to know we could openly discuss our MS without concerns of employment discrimination, or even worse- termination. I was comfortable with sending an email to my department, sharing with them my diagnosis, and eliminating any questions as to why I would stagger to the restroom or take more than the usual number of sick days.
Concerns about sharing this news at work
For my situation, it only made sense to come out with my MS but sadly, this is not the case for so many others - they are constantly worried about being found out and the risk of losing their job, their health insurance and their professional identity is a concern.
Coming out at work
Shift.ms is a charity based in the UK, founded by younger people with MS who are looking for ways to connect with other people in their 20s and 30s. Due to age and life experiences, my approach to issues of marriage, parenting, dating/relationships, and employment is very different than the primary population that hangs out at Shift.ms. Their videos on life with MS and the ensuing issues (and solutions) continue to illuminate how different their needs are than mine. In observance of World MS Day 2014, Shift.ms released their latest video - Circle of Truth – that gives their fresh perspective on coming out at work. Please stop and watch this piece- I promise at the very least, you will be entertained.
Working full-time with MS
Working full-time and managing a chronic disease like MS is complex; few of us have the luxury to walk away from our employment and give MS our full attention. Although there are employment discrimination laws in place in the US to protect us, particularly through the Americans with Disabilities Act (ADA), it still helps to have an understanding employer to accommodate our needs for time off, any special work considerations and the unexpected changes to our schedules thanks to doctor appointments and relapses. Protected by the ADA or not, we hear stories of people with MS struggling to stay gainfully employed, feeling the push out the door by their HR departments, increased scrutiny from their supervisors and hostility from coworkers. Christie writes for MultipleSclerosis.net about Leading a Double Life and keeping her MS quiet from her coworkers and drew a passionate response from others in the same situation.
Should you tell your employer?
When I hear the question – should I tell my employer about my MS? – I recognize there is no simple answer. Much like Gen shows in Circle of Truth, it’s a decision not to be made without thinking it through.
Wishing you well,
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