Advocacy, Multiple sclerosis

Advocacy day!

Break out the party hats and funfetti cake because it’s World MS Day!

OK, so maybe this isn’t so much a celebratory event as it is an awareness day. But I ask, Marie Antoinette, when is it not a good time for tasty cake with festive confetti pieces in it? And I would laugh my ass off if someone made me a “Sorry you have MS” cake.

A cake for today have to be a record-setting piece of confection: I am one of 2 million people across the globe with this disease.

On a serious, non-cake note, one of the major platforms for MS advocates this year is encouraging employers and policymakers to make it easier for people with MS to stay in a job.

This certainly strikes home with me.

Upon learning of my diagnosis, I freaked out a little. If by a little we mean I shut down mentally and emotionally and couldn’t perform even the most basic of functions. Thankfully, that only lasted a week or so.

I debated even telling my co-workers and supervisors. I feared having MS would seriously impact my work.

It has and it hasn’t.

Physically, I don’t have a demanding job, so there haven’t been a lot of changes to the work environment. I park closer, but that’s about it.

I do have to be much more mindful of the hours I work. I have a job in which I could put in 12 hours a day and it still wouldn’t be enough. I’ve had mixed success with that, given the busy news year it’s been.

The biggest issue has probably been combatting the perception that I can’t do as much now.

My ability to perform my job and skill set hasn’t changed. Yet I see that I’m being passed over for special projects.

It’s frustrating, because I feel like I’m being handled with kid gloves. Yes, I might have more doctor’s appointments. Yes, I might leave an hour or two early some days. But I have missed just one day because of MS since October.

I tend to push myself. But I feel like I have something to prove. There is a sense of self-worth and accomplishment that comes with not only having a career but thriving in it.

And I’ve risen to the challenge in several ways, yet that doesn’t seem to register with some.

So today I’m signing this petition: http://worldmsday.org/draft-english-world-ms-day-2011-campaign-for-access-to-appropriate-work/

Because MS doesn’t stop me, or thousands of others, from being a valued members of society or our workplaces. Don’t count us out, and certainly don’t treat us like we are helpless.

But do give us cake β€” we deserve the treat.

4 thoughts on “Advocacy day!”

  1. I hate that you’re being passed over for special projects! If anyone should be given special projects it’s you!

  2. If I’d known ahead of time, I would have brought you a cake. I’m not promising that I would have baked it, but I would have bought a lovely one. πŸ™‚

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