An Information Manager with MS Part 2

Hello everyone, Today is World MS day, and like I did last year, I would like to take this time to talk about Multiple Sclerosis. MS is a topic that is near and dear to my heart, which isn’t technology and Organizing your Digital Life. Today we’re talking about MS and what happened when I got diagnosed. It was a troubling time for me. Partially because I was in that stage of your career where you have JUST emerged as a trusted resource, but you still feel like anything could tip the balance, not in your favour, but because my diagnosis made me question damned near everything about my career and where I was going to end up. Because of this, I made a decision. I decided to hide my disease from the people in my office. I told my immediate manager and her supervisor, but aside from that, no one in my office knew. At the time, I had what I thought was very logical reasons for not telling anyone, but upon reflection, I knew that they were all wrong.

1) I was deeply self-conscious – Ok, so this reason may not be the most logical of ideas on the outset, but it made sense to me. The only things that I had known about Multiple Sclerosis were, if I’m honest, from what I have seen on the West Wing, and watching the President’s journey with MS. I had done a small amount of research, but not enough to make myself feel any better. When I looked on the internet for things related to people with MS I found only two types, Videos of people talking about the things that they used to do (which made me feel quite sad) and videos of dusty scientists talking in very technical terms about what MS is (which didn’t help at all). I was getting nothing from the research that I was doing, and I really had no idea what was going on. One of the things that stressed me out more than anything else is when I can’t control a situation, and when the doctors were saying that my MS was stable, but that could change put me in a tailspin of self-doubt. I didn’t know what to do.  

2) I was worried about my career – I had just been told that I had been diagnosed with the condition that could have the possibility of impairing my cognition and ability to remember things. One of the things that I prided myself on was the ability to remember every corner of the filing system that I was working on at the time and be able to recall on the spot where documents were in that system. I would have recurring nightmares about everyone I worked with ceasing to trust me because they would assume that I didn’t know what I was talking about. I would express my opinion, and it would get flatly ignored. It was not an excellent mental time for me. I kept my MS mostly to myself because the last thing that I wanted was to have the people in my life offer me pity instead of support. I was petrified of losing the respect I had worked so hard to gain.

3) I didn’t know what was in store for me – Because of the nature of MS, there was then, and to a certain degree still is, no telling what is in store for me. While the stats say that there is a little less than a 15% chance that the most extreme situations are waiting for me (That would be I lose the ability to function), it was in that 15% where I found my mind going for quite a while. Because of what had happened with my MS previously ( I had woken up one morning a few years earlier utterly blind in my right eye with no warning at all) I didn’t know what was going to happen next. MS can be a somewhat unpredictable disease, and I thought that telling people outside of my immediate family would make it more real. If everyone knew about my MS (my thoughts at the time were), then people would be constantly worried about what would happen to me. I feared that they would be continually asking me questions about what was going to happen to me, and quite frankly, I didn’t have any answers.

The place where I was working was, for the most part, completely unaware that I had MS. If I’m perfectly honest, I’m not 100 percent sure that I regret it. At the time I was processing the fact that I had this disease and I don’t know if I would be able to cope if I had my entire office pelting with questions that I didn’t have answers to. I want to be clear; they were and continue to be good people. It’s just that I was not ready to talk about it. It’s taken a long time to come to terms, but I’m in a really good spot with my MS. Yes I have episodes, and yes they suck, but I’m fortunate in that with my Relapsing Remitting MS any episodes I experience I generally experience a full recovery. The office that I’m working in now is aware that I have MS, and I am thrilled to report that it has not made a lick of difference to them. All of my fears about people continually questioning me about my MS were completely unfounded. If nothing else I have seen nothing but unwavering support for all of my en-devours.

MS is a disease about control. Particularly about the potential of the loss of motor control. In my experience, the people who have this disease want to know that they are in control of their lives. I know that I certainly do. I have recently been in touch with someone who has been recently diagnosed. I am trying to do my best to help them while keeping them firmly in the driver’s seat. I have full confidence that this person will eventually be able to cope with the new reality that they are facing, but like anything else, it just takes time.

If you know someone who has been diagnosed with MS (and it’s very likely that you have), then the advice that I would give you is to be patient with them. It’s entirely possible that they have got a handle on their disease. I believe that over the past few years, I have come to terms with what MS means for me, and I have been able to speak openly about it.

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