Leaving your job because of your MS? You’re not alone. Living Like You blogger Willeke shares her advice for how to move forward.read more
When I decided to stop working after being diagnosed with multiple sclerosis, I suddenly felt as if I was facing a sea of eternity. Certainly, there are endless ways to spend your time besides working, but finding something that’s meaningful, rewarding and realistic is another story.
Our national MS Society – MS Ireland – had been on my radar from the moment I was diagnosed ten years ago, but I never found the time to actively engage with them. Almost five years post-diagnosis, and after retiring at the age of 36, the society came back to the fore. I became a voluntary spokesperson and started advocating with and for them. Advocacy work quickly became my main drive and passion, and I found myself inspired by creating good out of something unfortunate.
Thankfully, the society gave me plenty to think about and stand up for. I was already interested in patient advocacy and local and national politics, so policy-making featured high on my list of interests, and was something I could often do from home. With MS fatigue and chronic pain featuring strongly in my daily existence, I needed the flexibility to schedule times of forced rest and sleep whenever needed.
Any organisation or society that deals with disability and medical issues simply cannot have enough support and volunteers. The people that keep such organisations running are sometimes able-bodied, and because there is not one “ideal sick person” they can learn from, they need the “inside view” of much of what it’s like living with such or such an illness.
When I can, I attend brainstorming sessions and conferences, as well as write for the MS society’s blog. Truthfully, the thought of money never crosses my mind when I advocate. Selflessly helping others makes my life infinitely richer than any job ever has. It comes from my heart, from the wish to make lives a little bit better for those who don’t like speaking up or don’t have a voice.
Advocating and writing never feel like a paying job, because it is immensely more rewarding on a mental and emotional level, and on such a level that no paying job could ever give me. The interactions I have with people with MS, the MS society, the writers, the politicians, other organisations, people at conferences and the general public can never be replaced.
Helping others is something I’ve always been keenly interested in, and advocacy volunteering makes me feel happier and more fulfilled than any paid job ever could.