There are
two ways we can approach our disability. We make it visible all of the time by
making it a primary part of our conversations, and by acting the part. Or, we
only talk about it when we have to, and we try to look as normal as possible. I
am one of those in the later category.
I don’t
want my issues to be the topic of constant discussion. I want to live my life
as well as I can, and try things I know I shouldn’t do. It is a part of who I
am and I pay a painful price for doing those things. I get tired of constantly
explaining why I must be excluded from activities, or I don’t feel good today,
or I need to rest, and recharge my battery (literally, I have to recharge the
machine implanted just above my hip twice a week).
It is not a
matter of pride that I hide my disability as much as I do. I just don’t want to
turn my issues into other people’s burden. I don’t want to put myself in the
position of having people judge me, or think they can give me advice to
instantly solve my problems. Then, there are the people who think they can
match my issue with their own issues (which almost never stack up). Comparing
Stones to pebbles rarely leads to a positive conversation, so I stop talking
about my issues and spend my time sympathizing with theirs. People would rather
talk about themselves anyway.
So, here is
the important principle that I have discovered. People are not very sensitive
to my disability because for the most part, I don’t want them to be. Their
responses are my own doing. I should not be bothered by how they respond. It is
a byproduct of trying to look and act as normal as possible.
It does
bother me at times when people are not very sensitive. I can get discouraged
like every other person with an invisible disability. But, I constantly try to
put the whole thing into perspective. In fact, I try to be happy when people
tell me that I look fine. It means that I am, in many important ways, “fine”.
Their surprise means that I am having some success at being a “normal” person. It
means that I have succeeded at not making my disability the main part of my
identity. People who really know me understand, and are very generous with
their support. To me, that is all that matters.