sarahshift 19/10/17
Last reply 3 months ago
Work and life after diagnosis

Hi all,

We’re working with an artist who has MS to create an artwork that is inspired by people’s experiences of how MS affects work and the relationships around it. We want people with MS or people affected by MS to share written or verbal responses on how their work life has been affected after diagnosis.

More specifically:

What is your profession?

How did you communicate your diagnosis/situation to your colleagues? What was their response?

What has changed?

How have you adjusted to what you do ?

Did you find positives and negatives to your situation?

Could you supply a photo of yourself at work / on the way to work / or would you rather remain anonymous..?

We’re planning to use as many of the responses as we can to inspire an artwork that will raise awareness of MS in the workplace. We would like to contact and speak to some of you to further develop the artwork. If you’re happy for us to contact you about this, please email me, [email protected] or send me a PM and we can follow up.

Thanks
Sarah

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superma51
6 months ago

Hi
I am an Administration Manager. I initially had a CIS and now have RRMS after further relapses. I found it very difficult to share with colleagues as no-one seemed to understand the condition I only shared with my own line manager st first. As my mobility became worse I felt as though I was perceived as being lazy as it was questioned why I could no longer go to certain buildings due to the parking facilities being so far away. “Why don’t you use a walking aid or wheelchair” I was asked but why should anyone dictate how I handle this condition it is my body and I will do the best I can for me and if this means walking but nit as far as I used to then do be it. The messages to my muscles may be damaged but I want to keep my muscles as strong as I can for as long as I am able.
I used to say that I had hurt my leg or had a bad back to cover up the real reason but now I quite openly tell people I have MS.
If you want to ask me anything please do.


mrvelocity
3 months ago

Hi, I’m Shane
I was diagnosed with RRMS in January 2011. Nearly every Christmas I have issues related to my MS. In December 2009 I started collapsing out of nowhere whilst I was walking. This went on for a month and I was sent for a spinal MRI which didn’t show anything. In December 2010 I had extreme vertigo where even an injection for vertigo didn’t work. This is when I had a brain MRI done, which found from that I had RRMS and at the time it was active in my optical cortex where the brain meets the spin.

This is when I told my employer and at first they seemed to be helpful towards me but eventually it felt like I had to cover myself and explain everything in length as to why I couldn’t do something. Heat is a main factor that makes my RRMS worse and for that reason I was glad I worked in the chillers mostly.

I am now unemployed due to having Osteopenia in my left hip and I’m forced to use crutches outside the house.

If their is one thing I could do in life, it was to be able to work. Sitting at home all the time gets boring and depressing.

I use to draw cars when I was younger but find it hard to draw these days because I sometimes get hand shaking when I’m concentrating, stressed or tired.


thaplisa
3 months ago

Hi Sarah,
I would he happy to participate.
Regards
Santosh


sarahshift
3 months ago

Thanks @thaplisa

Would you be able to email me [email protected] answering the questions from the post at the start of this thread?

Thanks
Sarah


isaacson72
3 months ago

Just sent you an email!

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