Like any long-term illness or disability, MS can have far reaching implications and can literally turn one’s world upside-down. Obviously, all cases are different and vary in severity but in many cases, not only can one’s physical limitations be seriously challenged but also one’s mental, emotional and, more than likely, financial ones. The career aspirations you had may have to be radically overhauled; the lifestyle you had imagined for yourself and your family revised. And ultimately, in order to keep as well as you can, it may mean giving up work at some stage.
I had always loved working; it gave me a sense of purpose and belonging. I worked hard from the age of 18 and despite a diagnosis of MS when I was 23, I carried on in employment, through ups and downs, until I was nearly 40. I felt like a worthy member of society who was contributing. It allowed me to live a semi-normal life. Go shopping, go on holiday or treat myself and not feel guilty. This very sense of value I put on myself boosted my self-esteem and mental wellbeing.
Like many of my friends with MS that I have spoken to, I was determined to keep going and not be beaten by this inconvenient illness. We forged on like ‘valiant soldiers’ but really, we should have been minding ourselves and listening to our bodies. We dragged ourselves out of those relapses, so we could keep going… until the next one. We were determined to live a ‘normal’ life but found ourselves in a vicious circle of working too hard, exhaustion and sick leave, until finally we copped ourselves on and realised something had to give - or we didn’t and our bodies called time.
And that is exactly what happened.
So now that I was no longer working, who was I? What was my purpose? I was a leech, a drain on finances, I needed minding, looking after and being supported financially. That mortgage that we took out together when we were both employed now fell on the head of my husband. The monthly outgoings were still the same, but the income was reduced. And when the recession hit and things were oh, so tough, he was the only one who could drag us out of it. All the while I felt like an impotent bystander, a ‘Sitting Duck’!
And so began the downward spiral. That mental wellbeing and sense of value I was talking about started to deteriorate - eroded by guilt and feelings of inadequacy. Slowly at first because when I first had to give up work, I assumed I would just take a break and then get right back in the ring. I didn’t realise that one year… two years… 10 years on I would still be outside the workforce and merely a social welfare statistic. But here I was, and that takes its toll on anyone’s emotional and mental resilience.
I know I am lucky. When I ceased working I went on Disability and was transferred to the Invalidity Pension the following year. A weekly payment that allowed me NOT to work. This sounds fantastic, you might think - being paid without having to work. Nice one! And for some people, this is the answer to their prayers. But definitely not for all. Many people of my age (48) with MS, who have worked hard to build their careers and have found themselves on Invalidity Pension yearn to go back to work. For starters, the weekly payment doesn’t come close to the full-time weekly wage they were used to and/or needed. But more importantly, they don’t want to be dependent on the State. They don’t want to be dependent on anyone.
But common sense must prevail and accepting the way it is doesn’t have to be defeatist. I have been given a valuable commodity… time. Time to take time, to rest when I need to and time to spend valuable moments with my other ‘valiant soldiers!