It's fair to say that most people I come across at work, and in my daily life, don't know I have a chronic condition.
Apart from the occasional day, when I'm limping because the pain is in
my hips or knees or feet or ankles, and on those days I use a walking
stick, I'm to be seen walking (albeit slowly) and shopping like any
normal family man.
At work I really have to try to hide my
condition for fear of losing my job, so I 'push through' whatever pain
barrier I have to beat to do my job and, on the days when I fail to beat
the barrier I have to call in sick - resulting in a risk of losing my
job.
Thankfully my employers have 'recognised' my condition and
are (for the time being) understanding to a degree - the same cannot be
said for my immediate colleagues and lower management teams. Explaining
that I'm not able to do certain tasks to my Team Leader or even Store
Manager gets a 'blank' expression and the question "Why not?" to which I
tend to respond "Well, my
*back/elbows/feet/hands/neck/shoulder/leg/groin/arm/bowel is giving me
jip." (*delete as appropriate) when what I really should tell them is "I
suffer from Fibromyalgia and Crohn's Disease - both are chronic
conditions which do not improve and can only be treated with all manner
of lotions and potions to enable me to function in a very basic way for
most of the time. HR are aware of my condition and expect that, at least
on some days, I cannot fulfill all of the roles required of my job
function, on these days it has been agreed that I can only undertake
'light duties'"
But still they don't understand.
Their role is to see that all of the tasks for the day are completed and
having a member of the team who 'cannot play ball' just slows them
down. But what if I suddenly announced that I was pregnant? Or I
struggled in to work with a plaster cast on my arm - they'd thank me for
turning up and give me light duties without question. However, 'light
duties' generally means standing for my whole shift at the checkout -
which causes no end of trouble for my back - but hey-ho, you take what
you can get! At work my invisible illness is seen very much as an
inconvenience.
Colleagues of the same role - who aren't on
light duties - question Team Leaders as to why I'm not doing any of the
heavy stuff and I have caught the Team Leader's response once or twice
as "Oh, he's got a (finger quotes) bad back". Understandably
this leads to a bit of resentment on the shop floor - I'm sorry (and
ashamed) to say that I might have felt the same way not so very long
ago.
Having an invisible illness is bad enough in itself, but
to have to constantly explain to people what it is exactly that's wrong
with you - even people you've told many times before - sort of gets you
down, if not extremely angry. If you met one of your friends in the
street one day and noticed that he'd lost a leg or an arm you'd remember
next time you saw him, wouldn't you? And you certainly wouldn't go home
and invite him to your next cycling club meeting.
So, how do you make an invisible illness visible? Wear a badge? Or tee shirt?
I'd love to hear how other sufferers explain their illness(es) to their
colleagues, friends, even family. Hopefully someone will come up with
an excellent phrase that I can steal!
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