MS Closet

You may smile when initially reading this and it does even bring a rise smile to my face. But, it is a very real and a very personal place to be.

To avoid confusion, what I mean by the term "MS Closet" is my personal choice of telling or not telling people about my MS. Do I want to keep the fact that I have this condition to myself or do I tell the people I know?

imageFor some this may not be a big deal and sometimes the person may not have a choice, as the condition may have progressed to a point where they are unable to hide

On diagnosis my initial reaction was one of relief, as I finally knew what was wrong with me. Finally there was a name all these strange things that were happening to my body. However, as pleased as I was to find out, I still did not want the whole world to know. The main reason for this was the stigma attached to MS and the general conception of the condition. It was always seen as a doom and gloom thing, and I didn't want people I know to associate me with that type of doom and gloom.

This is not to mean I kept it to myself altogether, I was just very selective who I told and when I told a certain "group" of people. Initially I was very relaxed about the whole MS diagnosis; I didn't even tell my family until it came up in conversation a month later. I had accepted it, but thought it would just go away after a while.

Anyway, as I initially mentioned my reason for staying in the closet was due to the doom and gloom that was associated with the condition. However, I still had a group of people I would mention it to. This would include my closest friends and also my Managers at work. At work apart from my Personnel Manager and Store Manager, no-one else knew and I made it clear that I didn't want anyone else to know. I was not obliged to tell anyone, but knowing that I may need future time off for appointments and also there may be limitations to what I can do. On a personal note, it was a relief too.

The reason for this was because I had worked hard to build a reputation and a legacy, and I wanted people to expect the same high standards from me and I wanted them to be as demanding as they always have been. I did not want MS to result in people going easy on me. As a result no-one at work knew and I continued with making elaborate excuses for my worsening mobility the next four years or so.

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Even outside work I didn't want friends and extended family to know. I just kept MS to myself!

Over time I would start mentioning it to people, as my symptoms increased and my mobility deteriorated. Basically I had no choice and I needed a reason for what was wrong with me. I was actually presently surprised by the reaction and it wasn't the big deal I had worked up in my mind. I expected an interrogation and questions, but my worries were unfounded. In a couple of instances, people had worked it out.

It was only in 2012 where I finally came out and started mentioning it on facebook freely and that is a whole six years after diagnosis. I use facebook as an example, as it is a very public forum.

Looking back, I don't know why I reacted like this; maybe I was just having a hard time accepting it. Most of all, my pride just didn't want the people who knew me for who I was, to change that opinion or see me in a different light.

In terms of my advice, I would say it very depends on you personally and who you want to tell, but I would say your direct family and closest friends need to know, as this is who you will spend most your time with and also who will have noticed the changes. With regards work, this is a personal choice, it depends a lot on the impact of future career prospects, your company policy and how understanding your boss is.

As with anything, please feel free to get in touch if you like.

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