Having to Explain an Invisible Chronic Condition

One of the most annoying things about MS, besides its terrible timing, is that for much of the time you appear completely well to others. I cannot tell you how many times friends, family and colleagues have recently told me how good I look, when I have had the worst period of MS-related symptoms since, well, ever: it's amazing what make up can do!

Strangers on the bus or train can't see that your energy is quickly running out at the end of the working day, and that you'll need that seat or you'll be solely responsible for holding up entire train lines.

No one sees you grip your painful arm or your stomach while at your desk or in a meeting. Or the rising panic which ensues in your mind when a lift is broken and you're based a few floors up. 

A friend recently asked me, "Why don't you tell us what's going on?" This is a valid point. I come from a very corporate background, where either your personal life should not be brought to work, or  only shared when it doesn't involve real personal stuff, i.e. things that really affect you. I find it difficult to shake off this approach, and so when someone asks me how I am, they usually get the stock response "I'm fine, thank you" because it's easier to do that than to explain. It's a tricky balance raising awareness of MS and it not being the first thing someone thinks of when they think of you.

It's even more difficult with strangers or acquaintances. Trying to explain MS in this scenario can be exhausting, particularly based on prior knowledge that you'll probably not be very successful in getting the message across. What this leaves you with, however, is a frustratingly complex situation. Your absence at social functions is noticed, as well as your word-finding difficulties in large meetings, which is instrumental to you withholding contributions.

Worse still, is when you are sized up by strangers, who have no depth of empathy at all. People will always judge what they don't understand and, sadly, a lot of the time, there is much more judgment than understanding.

So, it comes down to this: do we keep singing the same hymn sheet or do we let go of what we cannot change and therefore bypass others' judgment of us?  I think we'll probably wear a different hat on a different day. Perhaps the most important thing in these situations is to not beat ourselves up if others don't understand. Our energies are best served elsewhere.

In honour of MS Awareness Week, tune in tomorrow for my blog on adapting to change.

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