I
am a very lucky woman.
Despite working for a very, very
large employer, I have a wonderfully supportive group of people around me. They
do their best to understand and support me through my journey with RA.
But sometimes I have days when I
wish I hadn't told anybody.
Then, on the days I walk with a
limp, I could blame the gym. On the days I wear gloves, I could blame
poor circulation. On the days I am in incredible pain, I could blame a
overly-physical game of mixed netball. On the days I am exhausted, I
could blame a late night.
Instead, on the days my body is
at odds with my mind, everybody is acutely aware of the why. Then,
because they care, they offer suggestions. Like "why don't you take
(new position), it'd be better for you. You know, a desk job.".
Or "You look really exhausted, why don't you think about cutting
back your hours to something more manageable?". Or "You really
should take a holiday. You look like you need a break.".
The truth is, none of these
suggestions help. They hurt.
Am I doing my job? Am I
doing it well? Am I in any way not performing to standard? Has
someone expressed a concern that I am incapable of doing my job? Have I
made a mistake that could have hurt someone? If the answer to any of
these questions suggests we have a problem, then we should talk. But until that is the case, I
am doing my job. My current job. The job I enjoy and love, and, to
be perfectly honest, am bloody good at.
I am acutely aware of the fact
that my body will one day decide that it has had enough of my pushing it to its
limit on a daily basis. I am aware that the career I have carved for
myself will have to be abandoned in favour of my failing health. I am
fully aware that my brain will well outlast the chassis in which it lives.
I do not need
reminding of this, and I do
not need to be pushed in that
direction prematurely.
My recent experiences reminded me
of a number of other things that "healthy people" shouldn't say to
people who are chronically ill. They include:
You don’t look sick. You don’t look
insensitive, either. This is never a compliment, no matter what tone it
is said in. I don't need to justify my illness.
There are other people who have it way worse than you. Thank you, I am very well
aware of that. I do work in an Intensive Care Unit. This doesn't
make me feel better, and in fact, makes me feel as though you are dismissing my
illness.
Why can’t you just do (insert something here)? Because I can't. I
have this conversation with myself this all the time, “Grit your teeth and just
do it. Why can’t you just (exercise/work more/do something after work instead
of going home and going to bed etc)?”. Imagine how badly it hurts when someone
else says it.
It’s all in your head. I
beg to differ. I have a number of doctors who have told me it's all in my
body.
Stop feeling sorry for yourself. I’m
not. But I won't deny I have a feeling of loss. Does it surprise
you that I miss being healthy and happy? It shouldn’t. I need time
to feel sad and come to terms with the door to a part of my life closing.
I need time to get used to the new normal. And yes, we are almost
ten years down the line but I am still coming to terms with my normal on a
daily basis.
You need to think positive. Believe me, I wish it were
that simple.
Oh, yeah, I have a really bad
knee/ankle/shoulder. I'm very sorry to hear that -
however there is a good chance your sore joint is going to repair itself with
time. My joints are attacking themselves from the inside.
You just need more sleep. I live on the few precious hours
sleep I get at night. But when you can't sleep for pain
("painsomnia", it's good fun) or because the medications you are
taking leave you too hopped-up to get to sleep, no amount of desire to sleep
will get you over the line. Honestly, if only we could get each day to be
36 hours long, then I could sleep for 24 hours and still be functional for 12.
You’re always too sick to hang
out. Stop being anti-social. Believe me, I would
much rather see my friends than collapse in bed at the end of each day - but
there is a limit to what I can manage in a day on minimal sleep. If
people don't understand this, then they're not my friends.
You just need to take your mind
off being ill. Fantastic idea. If we have a time
machine and I can go back to my life before my diagnosis for 24 hours, that
might just do the trick.
You need to be strong. Actually, no I don't. Who
do I need to be strong for? Being ‘strong’ to please others? I
don't feel the least bit guilty about having bad days.
Maybe you need to improve your
diet. My body is a temple. I wreck it with awful
toxic drugs, and I try to undo as much as possible by eating healthily.
Again, if I could cure myself by eating a raw, macrobiotic, organic,
vegan diet - I'd do it in a heartbeat.
My aunt had your condition and she
got better. I'm
thrilled for your aunt. However, just like our fingerprints, we are all
different. My disease may be more severe, or more relentless.
Unfortunately one person being cured doesn't mean a cure for everyone.
You’re sick, again? I apologise. It's kind of an
inconvenience to me too, you know.
No pain, no gain. I'll
give you a tip: chronic illness is not like being a sports-person or
having a bikini wax.
Are you sure you should be
taking all these medicines? Well, given I'm a) sick and b) a
pharmacist, I'm going to go with yes.
You just need to drink more
water. My
three litres a day is suddenly insufficient?
I read somewhere that they are curing your disease with **insert
bizarre remedy here**, have you tried it? Unless you are a researcher
and you are offering me a place in your trial, I’m sorry but I can’t take the
suggestion of unicorn hoof capsules/flying pig feathers/fairy dust infusions
seriously.
Recent history suggests I am not
going to be free of this battle for a while, but I intend to fight it like I
fight RA: with grace, persistence, wit, intelligence and determination. And I will fight like hell.
