Yesterday I twitt chatted about work and Multiple Sclerosis at the wonderful Twitter event #WorkOutMS. Organized by the European Multiple Sclerosis Platform, hosted by Emma Rogan and with a special guest like Shift.ms, I couldn’t have been in a better company. It was aimed at shedding light to working with MS in today’s context.
WHAT WAS IT ALL ABOUT?
Important topics were adressed, as the twitts came pouring down the screen. Issues like remote working, flexible hours, colleague interraction, adapting the workplace to Multiple Sclerosis, disclosing the illness to the employers and team, gathered all of the participants in sharing knowledge, insight and encouragements on the matters discussed.
Work is an important part of any adult’s life. It gives you something to do, something to contribute to society, it supports you financially. It even defines your identity and self-worth. That’s why, when you get diagnosed with Multiple Sclerosis, you enter mourning. You grieve not only your long lost health, but the future of your job and/or career. What will it happen now?
MY STORY & HOW CAN YOU ADAPT IT TO FIT YOU
As I returned to work after a week in hospital (I talked more about it here), I was fair and square with my employer and told him I have been diagnosed with Multiple Sclerosis. I was faced with the classical appoach: “Are you all right? Are you going to be able to live the same (to be read as Are you going to be able to work as before?)? I am sorry this happened!”.
Over the coming week, I sensed a powerful tension between me recovering from the optical neuritis and my employee being concerned with recovering his sales target that month. We had a lot of back and forth conversations about strategies, quotas and persuasion techniques.
Untill later that week, when he told me I needed to do more and that he doesn’t see that in me. I sat and thought about that and I suddenly realised that he was right. I did not have it in me to make his quota. Simply because I was feeling used and robbed of my right to heal. Robbed of my time to understand the things I was going through. And so I resigned and took a sabbatical to clear and order my thoughts into place.
Taking a year off like I did is not a thing that all people with Multiple Sclerosis can afford. It was not easy, and it implied a bit of financial struggle. But we all need time. We all need to go through this life changing event at our own pace. Stress is not our friend, and dealing with semi-ignorant people sure doesn’t help much.
Of course, I am sure that on a human level he felt sorry and was compassionate for me. But on the other hand, I could see the fear that lurked inside him. Will his target be safe? Will he make the same amount of money? Am I still a productive employee?
As a future business owner, I totally understand him. He wants to make a profit. That’s why he got into having his own business. But he also needs to understand, he needs to help, he needs to see both ways. His employee also has need for profit. It also has bills to pay and a family to feed and a career to grow. I urge him to give more and ask for less. It will repay him ten fold. He just has to have patience.
IGNORANCE IS BLISS. OR ISN’T IT?
Most employers are unaware of the kind of issues people with Multiple Sclerosis face on a daily basis. Can you blame them? You too would be interested in making a profit while downsizing the overall costs, if you were in their shoes. That’s the capitalist “factory mentality”.
They have a business, they have employees that give their all and settle for a wage. Do the job less good than usual, and you become prone to being downgraded, less payed or even fired. And all that because you are not productive enough. Because you aren’t an asset anymore. You become a liability. How wrong is this mentality? Not so wrong given the actual corporate way of thinking. It’s all about profit.
But it’s also about understanding that an employee who has been diagnosed with Multiple Sclerosis does not stop being an asset just because it can’t work full speed ahead anymore. Multiple Sclerosis is a neurological illness, it has nothing to do with a person’s intelligence or mental skills.
At its best, it only deals with minor cognitive issues, fatigue and/or heat sensitivity. In worst cases, it has to deal with wheelchairs, speech or dexterity. But it is all manageable, it can be adjusted as to help the person dealing with it be the most productive he or she can be.
WHAT CAN BE DONE TO CHANGE THE STATUS-QUO?
In today’s world, lots of actions are being taken in order to support people with Multiple Sclerosis who want to keep their jobs and thrive on them. The best example I can give, and one that I am deeply happy about, is the European Employment Pact for People with Multiple Sclerosis (click on the link to read), created by the European Multiple Sclerosis Platform.
It mainly states that the working skills and abilities of a person with MS must be taken into account. It also treats important issues like staying in work / being active and self sustainable, in order to have a thriving personal and professional life while making money to support it all.
Last, but not least, it emphasizes to provide sustainable employment for people with MS.
My personal approach is to take a leap of faith and start my own business. Multiple Sclerosis is a condition that strips away all control. I plan to gain it back by taking control over my financial wellbeing and my career path. It is simply what I chose to do, not what I say you should do also. We all have our own lives, our own conditions, but in a life that has Multiple Sclerosis dangling over our heads, the best approach is to be proactive and take control over your life.
Fight for your rights. Fight for your wellbeing. Fight for destroying stigma regarding disease and incapability of work. Fight for a better future. With or without Multiple Sclerosis.
This was all for this week’s #SMartWednesday! Thank you for reading and if you would like to receive my next articles right into your mail, subscribe to SMart Choice and join my SMart Warriors list!
Have a most wonderful day!
(For reading the whole twitt chat I talk about, click #WorkOutMS)
Sincerely,
Alexandra
