When I sat down to write this blog post about MS and Employment, I thought back to a similar piece I wrote about 18 months ago. I re-read it today for the first time in ages, and I honestly wondered what to write about for this post, because my working life hasn’t changed that much since then.
Then I thought – well, maybe that doesn’t matter – the MS and Me blog gets new readers all the time, and maybe my writing this will help someone who is new to reading about our experiences. Maybe it is reassuring that things haven’t changed dramatically!
I think when MS is handed to you, especially if you are at the age when your adult life is just taking off, one of the first things you worry about is how long do I have left at work, will I be able to support myself and my family?
I was diagnosed just before my 30th birthday, at a time when my career was beginning to take off. I had so many mad plans and dreams – many of which I would never have had the guts to follow, MS or no MS – but suddenly, I was grounded with a bang. What was the point in making any kind of plans, if this illness was going to cut me off before I got to do them anyway?
The irony was, while I was busy being miserable about what the unknown future held, my job became a steady constant in my life. It was a routine I could follow without having to think too much about it. I have workmates who are wonderfully supportive – there were days they carried the load when Cog Fog wouldn’t allow me to.
I realise how lucky I am that my MS is stable – it hasn’t progressed very much at all over the last decade. In the meantime, my career has. I still have the wonderful workmates, and I’ve worked my way up to management level. I’ve been able to pursue different things within work, that weren’t part of my mad plans of my 20s but are more interesting and rewarding than I could have imagined. I have made adaptations and allowances for MS, but mostly I have been able to move forwards in a job I love.
My 'MS Assessment'
Every so often at work, we have a review. We go through the previous months, make plans for the future, and have a good chat about the things that have worked well for us and those that haven’t. I reluctantly adopt a similar approach to MS. I say “reluctantly” because it is not an easy thing to do sometimes – when life is going OK, I don’t like to look to closely at the ways MS can take away from it, but I think it is an important thing to do every so often.
When I am busy at work, I will ignore my MS, even though I know that in the long run I will pay the price for pushing myself too far. The to-do list of jobs gets longer, with self- care sliding further down it each day.
stop and listen
By forcing myself to do my “MS Assessment”, I stop and listen to my symptoms and my body and give my mind a break. It is so important to leave work at work, and to make time to rest and unwind. As I go into my 10th year working with MS, this is something I need to do. Maybe I can stick it on my to-do list!
In my earlier blog I wrote more about the small adaptations I’ve made and included some of MS Ireland’s resources for people with MS and their employers. If you are newly diagnosed, or thinking about disclosing your MS to your employer, I recommend reading the following for some helpful tips. Telling work about MS is a very personal decision, but something I am happy I did.
My previous blog about Working & MS