Quite soon after my MS diagnosis, a few people asked me when I would be giving up work. I was stunned.
Surely now, more than ever, I would need the security of a routine, wages and the confidence boost a rewarding job can give? It seemed to me that to stop work was an old-fashioned view and had no place in the 21st century, when there was so much understanding and support in place.
I stand corrected. Recent research uncovered the depressing facts:
- More than 75% of people with MS report that the condition has impacted their employment and career opportunities.
- Up to 80% of people with MS stop working within 15 years of the onset of the condition.
- Up to 44% of people with MS retire early due to their condition.
- People with MS lose an average of 18 working years, assuming a retirement at 60.
The report states that with the right support, people with MS could continue to live full and productive lives for much longer, yet during periods of economic downturn and job losses, people with long term health problems feel especially vulnerable.
Research shows that many employers lack knowledge about the condition and may not always understand that the needs of employees with MS can and should be accommodated in the workplace. MS is a ‘hidden disease’ and the extent of its impact is not visible to others and over 80% of us are affected by fatigue.
In my case, my chosen career path has veered off in a completely different direction than pre-MS. I was steadily building towards a new career once The Teenager was old enough for me to work full-time. I am a matter of months away from completing my second degree. It’s ironic. Just when my whole life was opening up, when I could put the years of child-care behind me and finally take on a much fuller role in my career, along comes MS and puts paid to my plans.
Life has a funny way of turning round and smacking us in the face when we least expect it. I could either crumple or make the best of a whole new situation and right now, I’m planning to work for as long as I possibly can.
I get asked a lot if I’d be better going part time… why? Do you think I am unable to do my full-time role? Only ever been off for 4 days with my MS in 3 years (and that was for steroid treatment at the hospital!). To be honest, I don’t think I have done too badly! And really, who will pay my bills?? They won’t pay themselves you know…. x
Hi Allyson!
I know exactly what you mean. People have funny views of MS, don’t they? I know plenty of people with MS who work full time. And I know plenty of people without MS who don’t work, lol. I thought the findings were pretty grim. We still have a long way to go to be taken completely serious in the workplace.
X
I bumped into a “friend of a friend” the other day, it was the first time I’d seen her since diagnosis. She asked if I was still working and seemed incredibly surprised when I said yes I was. I was cross at her assumption that I should want to give up. I work with a lovely bunch of ladies and when I’m at work I can forget about ms and be “normal” like everyone else. I would hope that with the ever improving DMDs on offer we should be able to function for many more years yet!!!
HiJenny!
I totally agree. My job at the moment is odd as I’m working with a friend and he enjoys taking the mick out of me losing my balance, tingling hands, etc, and it’s soooo good to laugh after the year I’ve had. But when I start my ‘proper’ job, I’m looking forward to just concentrating on the job and putting MS to one side. I can’t wait to feel ‘normal’ in the workplace again, where my MS is not an issue.
The future is hopefully looking bright for us, so bring on the research!
X
I’m self employed, fairly disabled, trying to keep my business going, 80% down in earnings, feeling guilty I’d let my right hand man down if I give up. Now fing he’s working directly for my customers. Handing out cards the lot. Gutted!! I know my working days are finished, but my brain still works, and my self esteem takes another knock grrrrr.
That’s awful to hear!! Sounds like he’s taking advantage of the situation 🙁
x