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Thursday May 31 2018 02:20 PM

This week Niamh McCarron shares her experience of having MS and working. Read on for her story of working and striving to stay professionally active and financially secure.

As I write this blog post I am on my way to a conference for my day job. This is a good example of how my work and MS life are intertwined.  I am often “robbing Peter to pay Paul” timewise, energy-wise and pain-wise.

The truth is, most people have to work, there are very few of us who have the resources to pack it all in and retire at 30 or 40. For people with MS, I think most of us plan (and hope) to work for as long as we can. Of course as illness progresses, this choice can be taken away from us. I am writing this post from the fortunate position of still being well enough to work,.

I’ve blogged about my MS Fears before. One of the things I am afraid of is having to stop working. I’ve been working in the same company for more than a decade and have built a solid career for myself. I work hard, I enjoy what I do and I am part of a great team of people. Giving up work would have a massive impact on my household financially, but it would also take away my independence and part of my social life too.

I’ve had to make some adjustments over the years and I’ve occasionally had to ask work to accommodate me where possible, and reasonable, to do so. Because I was diagnosed while working here, my colleagues have known about my MS as long as I have. I think that has helped. I didn’t have to tell them about it, it just became part of me and my life. I understand why others might feel that they can’t or don’t want to disclose their MS to their workplace. It’s a very personal choice to make. For me it would have been an extra layer of pressure to deal with, so I am glad they all know. Plus I am a blabber mouth and have blogs all over the place. It’s not exactly something I can hide at this stage!

In 2016 MS Ireland launched a set of Employment Resources to support people with MS and their employers. I encourage people to have a read through them, particularly if you are considering disclosing your MS at work. There are some great tips from others with MS as well as practical advice on what you can reasonably expect from your employer (and what an employer can do in terms of reasonable accommodation for a member of staff with MS).

I also think it’s great to highlight that so many of us are working away in our chosen jobs. MS doesn’t always mean the end of life as we know it. I plan to still be here in the next 10 years, hitting the snooze button for “just 2 more minutes” and dashing about the place trying to juggle work, home and other commitments. I’m determined to try, for as long as possible!

 

Links to Employment resources:

https://www.ms-society.ie/blog-articles/2015-launch-of-employment-resources 

Working With MS - Employment Resource for People With Multiple Sclerosis

Working Out MS in the Workplace - A Practical Toolkit for Employers

Multiple Sclerosis and Employment - Facts and Figures

Author: Niamh McCarron

Tags: work, employment, employer, guide, adjustments, disclosure work, employment, employer, guide, adjustments, disclosure

Comments

Roisin

Friday June 01 2018 02:49

Bravo!
Well done on a true and heartfelt blog; from a fellow person with MS
I want you to know, I stopped work recently, with all the fears and concerns you have and I want you to know how better off and happier I am ...yes I have a little less money in my bank, pocket & all around - however, I haven’t felt as content, happy, relaxed and chilled out - so, my advice to you would be; if you’re full time - go part time,.. if you’re already part time, just give it up - you don’t need the extra stress, as it is you’re worried sick obviously and you should know stress exacerbates an already bad situation, you will be ok, best wishes

Declan

Friday June 01 2018 10:45

Well said Niamh.

Mikéla

Sunday June 03 2018 17:41

I am very encouraged to hear of your experience, I was diagnosed in2014 whilst have a relapse, I work full time in a stressful job. I’ve been with them since diagnosis but not felt cared for.

I have just handed in my notice as I’m going to another job, and feel I’ll continue until I can not anymore, stay positive.

Martina

Monday June 04 2018 12:40

Hi there,
Thank you for posting this blog. I am in the same position and plan to continue working as long as I can as for me Work is an important part of my identity. For me my Manager has been very understanding and amended my work schedule to suit me which benefits my work and myself. Thanks again.

Niamh McCarron

Tuesday June 05 2018 12:36

Thanks for the comments everyone - it is definitely important to try to get the "balance" right. I am having a work from home day today, so that eases the stress of having to get to the office, and wear proper shoes :-) me and my slippers are plodding along, and might take a snooze at lunch time. I hope you all keep well, and are able to make the decisions that are best for your own circumstances.

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