I used to be nervous
that people at work could tell there was something wrong with me, and cautious
about revealing the truth that I have Parkinson’s.
As the end of the year approaches, I am now learning to
get over these psychological barriers.
Actually, for the most
part, people don’t notice that my right arm behaves strangely, or that I sometimes
tune in and out of meetings, or that my speech occasionally gets slurred. If they do notice, they probably just put it
down to my individuality. We live in a diverse world and thankfully most people
at work are very inclusive and tolerant.
I’ve now told quite a
few people I work with about my “condition”, including a couple of my clients.
Each time it gets a little easier.
Whilst I am not surprised
by anything anyone says, it’s worth noting that the correct response to being
told that someone you know has an incurable progressive disease is along the
lines of:
“I’m very sorry to
hear that. If there’s anything I can do to help, just let me know.”
To which I then say:
“Thank you, that’s
very kind of you. There’s nothing you can do, but it helps to be aware that I
do get quite fatigued from time to time because of the disease.”
The most irritating
response goes something like this:
“Well don’t worry about
it. I hear there’s lots of great research and there will be a cure in the next
couple of years.”
To which I reply:
“What the fuck do you
know about it? This disease has been known about for 200 years and there is
still no cure and no way of stopping its progression. I struggle every day with
it. I’ve met people my age who are in a really bad way only two years after
being diagnosed and I’ve heard of cases of people dying within five years of
diagnosis. And most of the promising drugs that work in the lab turn out not to
work on humans.” And so on.
Actually, I don’t say
that, I hold my tongue and thank them for their opinion. I realise they mean
well, but you get my point.
A derivative of this
that is particularly annoying is well-meaning friends or relatives at
Parkinson’s meetings who spout on enthusiastically about how to keep positive
and how to live with the disease. I tend to ignore them and turn and talk to
the people who are actually living with the disease. A bit rude I know, given
that the sentiment is meant kindly.
Fortunately, in a work
context I have not yet had this type of reaction.
In fact, bit by bit I
am also starting to get involved in diversity initiatives with my employer.
I’ve offered my
services to an initiative to raise awareness of flexible working (more on this
later), and am now getting invited to meetings of my firm’s disability network.
I’ve flagged my willingness to tell my story in diversity training so that it
may be of benefit to others. And I’ve
ticked the box on the HR system that says “Disability” so I am now officially
in a minority group.
I don’t now how
comfortable I will be with my situation being public knowledge across the
office. I don’t want or expect sympathy or special privileges, and I don’t mean
to unduly draw attention to myself.
But I’ve lit the blue touch
paper now and there is no going back. I don’t know where this will all lead,
but I hope that “going public” will only be a good thing.
