Working, it's important
- Olivia Merrick
- May 26, 2017
- 5 min read
I was never going to not work. I remember in my 20’s when I was diagnosed, and being terrified by the statistics for people with multiple sclerosis and their prospective career longevity.
Back then (2006) I recall figures of something like at least 50% of patients will, within 10 years of diagnosis "not return to full time employment at all". These figures I recount here, not only probably quite inaccurate, are at the very least superseded by 2018 figures. So maybe the MS world isn't saying you have half a chance of staying full time employed anymore (i.e. 50%).
But lets think about this. Whatever final statistical percentage is, whatever it is.... FFS.
What a bloody crap outlook. Pushed in to retirement at 35 due to illness. Given I’d only left University a few years prior to being diagnosed in 2006, with an Honours degree to boot… all that work, dedication, effort. To be told, as you are just breaching the surface of your career words that felt like someone was saying to me "no good, you’ll be done in a decade".
Seriously. FFS.
My second thought around this, being newly diagnosed was, if they're saying I'll get pulled out a few years in...what the is all this for then?
Seeing as a vast array of medical experts are telling me I’ll be put out to pasture in my 30’s, why am I doing any of this at all? Why am I working back weekends to make a name for myself professionally, why am I choosing to sacrifice other opportunities to “do the right thing, keep my head down, earn my stripes” etc if I’m going to be shelved in my prime, and put on the shelf soon!!?
All the while I’m thinking these thoughts, I’m on leave due to “significant medical complications”. I had never heard a diagnosis being described like that. Not to worry, my "significant medical complications" kept anyone form work well away from me and I had time with my family to work out what to do next.
If you’re fortunate enough to have your parents around during the time of being diagnosed, chances are there will be a moment where one of them does something that stands out in your memory forever. It goes into the same pile of standout achievement awards this parent has pulled of over your life. There’s only a few, because frankly they are generally always around and generally always annoying. Except when it matters. I am the youngest so have made it my life’s work to be very grown up and very independent. And then something huge happens and you’re 8 years old again, terrified and you're waiting around helpless, until your mum swoops in with her cape on, and literally saves the day.
So this was me, and this was Mum. I was, in my best attempt of being a grown up, living in my own apartment all by my own self. I’d been there for maybe a few weeks and in the mix somewhere was my diagnosis. The apartment was in a part of the city that was edgy and as cosmopolitan as Perth could scratch together. For any one who is from Perth, you know this actually means it’s bloody terrifying. I can still remember the realestate agent as we pulled up to her office to move me out of my pretend-grownup apartment. She was terrifying and looked like she meant business.
I’m not sure I even spoke. My mother proceeded to talk this lady in to submission. She frankly explained that I would be renting a different property, a charming little cottage much closer to home. And reasons for breaking the lease we’re sighted as “property unsuitable” with my mother explaining to this lady that poor sausage me, had foolishly “made a wrong choice” and that “it needed to be fixed.” At around about this point, in my mind at least, my mother swept around this lady's office practically in her cape. She factually explained that we were not going to be in that apartment anymore and that was simply, just, that.
And so without any fuss or, most alarmingly wonderful to me - any fees - my mother's secret mother spell worked a charm on this woman. And that was that. We walked out of that office and in to my lovely little house and never had to set foot back in the "edgy" (scary) apartment ever again.
I loved that cottage house. The place I ran straight to after my diagnosis and baked cupcakes for three days straight (when I'm anxious I bake, the smell reminds me of our home growing up). It was one of only a very few terrace house that Perth still held. It was tidy and charming. I used that address as my business’ postal address - I was given a great opportunity to do some freelance work. So I worked out of my little cottage doing freelance work feeling very much like a gigantic fishie in quite a very small pond. I was young, and very proud of myself.
Throughout that year I was diagnosed, I stayed in full time work, I was working for a large engineering firm. I was too timid to go out on my own as a freelance consultant for real. So I dabbled here and here but ultimately I kept working in my full time role. And after that first year when i read up big on MS statistics about everything, and how infrequently MS patients stay in full time employment, I actually never really gave it much more thought. Each project brought a new challenge, and often a new city. So before I knew it, with my head down and me moving form project to project, that mythical 10 year benchmark had passed.
There are so many numbers about what people with multiple sclerosis, statistically will or won’t do. Can and can’t do. I tell you, once I was diagnosed and read everything there was to read, I stopped listening. If I'd decided on a particular treatment pathway, and me and my family had discussed the risks and decided that specific way - and we had read up on this, accepted the likely prognosis and also the suite of possible side effects, once I decide to do it, I stop reading.
For me, seeing those figures written down about the statistical probability of my success or otherwise, makes me cry. It’s not that I feel driven to “beat the odds”. It’s more I feel so sad about the fact that I’m sick. And the fact that I'm terrified if I think about it, my fears might may eventuate.
See, if think that if I'm silent, and quietly carry on with my life - perhaps no one will notice that I’ve secretly slipped through. That I am actually still working, or still walking, or have had five babies or I've climbed Mount Everest. Or whatever it is I’m secretly doing without ever letting my MS and those damming statistics know.
When people ask me if I’ll still work, honestly I really look forward to that day when I can so I dont anymore - but that’s because I’ve done some really wonderful things in my 15 year long career. Though I only say that as its because my husband and I can start a family. That’s because I’m like most other 35 year woman want to be at home with my future children. Not because I’m sick.
I have spent my adult life working hard, now I want to be in a place where my next big role can be about being a parent.
So lay the foundations girls. You need a strong base to support your future selves. You won’t regret it. If you have the inclination and the energy to keep going, don’t let a pamphlet on “number of MS patients in the workforce” distract you. Go do great things in your chosen area, and only ever change your goals based on something you decide. Not on what someone else writes about what statitics say about you.
I’ll keep going, so can you.
Comments