October 19, 2016

car window road

Everytime I think that life would be easier if people at work knew about my multiple sclerosis, something happens that makes me glad that I am ‘still in the closet’, so to speak.

When to tell work

There are obviously times you need to or should tell your manager and/or colleagues.  When there are health or safety reasons.  When their understanding is necessary for you to do your job or manage your symptoms.

But for some of us, if we dont HAVE to tell, should we?

You can’t untell people

Once you tell someone you have multiple sclerosis, you can’t untell them.

And they will hear the words within the context of their own experience and knowledge of the disease.

  • An uncle that ‘died of it’.
  • A neighbour’s mother who ‘always complains about the pain’.
  • A former colleague who took ‘heaps of time off work’, letting down the team.

Unfortunately, because so many of us stay in the closet until we can’t, people’s perceptions of multiple sclerosis is rarely positive.  Rarely of those of us who beat it day in and day out for years.

So my recommendation, is that you plan to tell people when you have a broader narrative to share

  • Yes, multiple sclerosis is a chronic disease with no known cure
  • Yes, it can become serious.  People can end up in a wheelchair.
  • But it is different for everyone.  Everyone will have different symptoms, and respond differently to different treatments. And progress to a different timetable.
  • You have had symptoms since xxxx.  
  • Since then you have done (heaps of things in your life - got married, raised children, studied, traveled, worked on amazing projects).  This is where they understand that your life didn’t stop when the symptoms started.
  • You were diagnosed in XXXX.
  • These are your current symptoms and this is what you need from work (reasonable adjustment).

In a later blog, I’ll start to go through what ‘reasonable adjustment’ means - at least from an Australian point of view.  I’m sure each country has it’s own legislation and regulations to support ‘disability’ in the work place and reduce discrimination.

Why I won’t tell, at least right now

I work for a major employer.  And since diagnosed in 2013, I have had 11 roles, working for 16 different managers.  I seem to be the person that ‘fixes’ teams or ‘sets up’ new teams.  I’m the person they call on to do ‘stuff’.

So telling one manager would have meant telling the next, and the next, and suddenly there is no confidentiality - because they would all have ‘needed to know’.

Is that a problem?  

It is a question of trust. In yourself and the organisation.  I have heard of managers making hiring decisions based on their perception of a person’s reliability or use of sick leave. Do I trust my current manager?  Do I trust the culture that we work in?  Do I trust my future manager?  

I started in a new job four weeks ago.  Organisational restructure. My division was abolished and I am lucky to be placed in a job. Lucky nobody had the opportunity to judge me!

And that is why I am still in the closet, at least at work.  I am good at my job.  And currently I am judged on my ability to do that job well.  And I dont want that to change.