An Information Manager with Ms Part 5

Being diagnosed with a disease of any kind is challenging. No matter the severity of how it will affect you or those around you, it changes you. It certainly did me. When you get a diagnosis of any significant disease, part of dealing with it (aside from any medical mumbo jumbo that you have to go through) is learning to live with the fact that you have something that will possibly change the rest of your life. Living with something like MS can be a daunting task, and for me, it was a matter of how I would live my life from there on in.

1) When I was diagnosed, I had to make a decision – Actually, I had to make a couple of decisions, but we’ll get to that in a second. On the day I got diagnosed, I realized it would be up to me to define how my disease would define me. I’ll be honest, when I first got diagnosed, I wanted to hide it from everyone. I was a knowledge worker, and the thought process in my head was that I needed people to trust that I could do my job, and if there were doubts about my capabilities, it would make my job that much harder. At the same time, I also decided that I wouldn’t let my disease define who I was. Yes, I have MS, and yes, it can affect how I go about my day-to-day life, but instead of becoming a victim, I elected to do everything I could to make it so that I wasn’t one.

2) The outcomes of my initial decision – I have to say, the first decision that I made to hide it in my professional life, while it served me for a while, I’m now not entirely sure it was the right idea. I told my immediate supervisors, but that was about it. At the time, I was in the middle of working on a project that was received lukewarm approval, and I didn’t want to give the people who weren’t sure any ammunition to discredit my project because of my condition. I’ll be honest, in looking back, I think that in keeping my condition to myself, I denied the people in my office the ability to help me with it. On the other side, my decision not to make myself into a victim worked out well. I got back from getting diagnosed and practically matched right into my local MS Society office and signed up for membership. Having the MS Society of Canada behind me and supporting me was a great comfort when I didn’t have much information about MS or exposure to anyone already diagnosed. I chose to do as much fundraising as possible for them, which eventually led to my participation in the annual golf tournament.

3) The decision isn’t exclusive to MS – Hiding one’s condition isn’t exclusive to MS. Many people live and work in all manner of conditions, many of whom feel the need to hide in plain sight. The reason is straightforward enough o understand. For as long as we’ve had diseases, we’ve had people who have been ostracized because of their conditions. Even if their situation doesn’t affect them in their jobs or lives, some people feel the need to hide what they have because they think they will be shunned, even if they wouldn’t be.

4) Why I changed my mind – I’ve spoken before about the fundraiser Night to Fight MS that I helped to start, and to a certain degree, that was one of the catalysts that kicked me out of the closet. It occurred to me that perhaps keeping it a secret was neither serving myself nor the people who I could help. I have spoken to various people who have been diagnosed and the people around them, offering my thoughts and my experience with MS.

I was lucky. Aside from being completely blind in my right eye, my physical and mental symptoms have been relatively mild. I know that many have symptoms much worse than mine. The tricky bit for me was that when I got diagnosed, there were not a lot of hopeful examples of people with MS. I have to admit, I did exactly what the doctors told me not to do and went on Youtube to check out what was there for people with MS. I was very disappointed to see a litany of videos which were either people outlining the stuff that they couldn’t do anymore (super depressing) or crusty old professor types describing MS in a way that would make you die of boredom. In contrast, at the time, there was a “Fight cancer” ad that came out where you see people lacing up gloves and stuff to win their fights with cancer (way more inspiring).

However, there are some seriously amazing things you can find some fantastic stories about people with MS. One of the more recent ones that I came across was the case of John King. If you’ve watched an American Election in the past few years, you’ll know John King. Mr. King is the gentlemen at the election board talking about all the various districts, their election patterns, knowing who voted where and how it compared to last time around (or a couple of times around) and a seriously long list of facts to go with when there are no results to talk about. I always find myself glued to the American elections simply because of how good he was at explaining how things worked. Recently he spoke on CNN about his diagnosis;

I love this video for a couple of different reasons. Firstly, I am comforted to know that I’m not the only one who first knew my disease and then realized the mistake and corrected it. Second of all, he treats his diagnosis the way that I do; it’s not a burden, it’s not something to be ashamed of; it’s simply a part of his life. He hasn’t hidden behind it and removed himself from the world. He has continued to kick ass at his job, and I hope he continues to do so. For me, this is an inspiring example of how to deal with MS, and I do my best to live up to that level of example every day. MS is a part of my life, but it’s not the entirety of my life. I’ll continue to do what I can to help those looking for a cure, but in the meantime, it’s up to people like Mr. King and me to keep going and show the world that even though this disease can affect people’s lives, it’s certainly not then end.

What inspiring stories do you have?

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