What did you do today? Did you get up, shower, dress, have breakfast and leave your home? All set for your morning routine and commute to your workplace? Did you see the familiar faces on the train/bus/in traffic/on your morning walk? Maybe you had your charge of coffee or perhaps a nice gentle wake up with a cup of tea at your usual cafe? Or do you work from home with a shorter commute at the kitchen table or in front of your favourite window? When your day was over, did you have a sense of accomplishment? Or did you leave the office/work site, relived to get the hell out out of there, stomping work off your shoes with every step yet knowing it was okay because you we’re going to get paid at the end of the week.
Now, take all of that away. No routine, no social engagement, no cognitive stretching, no sense of professional accomplishment and no fulfilled ambition. Oh yeah, and there is no money at the end of the week/month that allows you to do things you want to do, to socialise and take care of yourself, your family, your future. Paid work opens up opportunities, provides income, a sense of purpose, dignity and social connectivity as Mary here so eloqently describes
Up to 80% of people with MS stop working within 15 years, an average of 18 working years, with huge costs to the exchequer as well as the loss of human potential. In Europe, MS ‘costs’ €15 billion with a further €5 billion lost in potential earnings and taxes.
Research has shown that disclosure, coming out about your MS to your employer, has a significant positive impact on how well people do in the workplace. There are also laws about your rights in work. Whatever you choose, here is a video from Shift.MS called the Circle of Truth that explains so well the predicament and is something you can share.
Employment and having access to work for people with multiple sclerosis, particularly the younger population, it is shamefully lacking attention. Not working affects our mental health really badly.
But what if it were different? What if we had access to the support, to tools to manage our workday and to inform employers working to the best of our abilities? We could stay earning, boost our cognitive function, get to fulfil our ambitions and save money for our future.
Would you like to get back to a suitable work position? If not full-time, perhaps part-time, 10 hours a week? For businesses it is about retaining loyal staff, having systems in place to support people with illness amongst staff and encourage diversity. For policy makers it is getting real about the ‘welfare trap’, having a system that is fit for modern purposes and supporting people who can’t work. Remember, it takes six people working to pay for the pensions of one retired person.
We are going into a future unprepared. There is still time to make changes to have workplaces that meet the needs of a diverse workforce, welfare systems that encourage, not punish, and society that views employment as a part of treatment outcomes. People with diverse abilities need to have access to work. Check out Kanchi attitudes and EMSP Believe and Achieve Project
Work is rehabilitative and the right work is good for our health. Access to opportunities changes lives; it can restore confidence and allows us to reimagine how to fulfil our dreams. All we need is for others to catch up. If I know one thing, we are great innovators and we can influence change. I ask you to get this issue into the public eye, share your work experiences (great, bad and desperate) with me on Twitter @emmadragon and start the conversation. As we are working on changing the world, do something today that fulfils one of your ambitions. It is the accumulation of many great little dreams that makes up the big changes.
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