Today’s post takes on a slightly different tone to my
previous written rambles. When I was first encouraged to write this blog I
wanted from the outset for it to be a true and honest reflection of what life
with a disability is like. I wanted it to cover the highs and lows that people
with disabilities (and their nearest and dearest) experience. I wanted to
challenge the image that mainstream media often paints, i.e. that people with
disabilities are somehow less able than their mainstream counterparts in aspects
of life including employment, family life and relationships. And I wanted to do
all of this by making people stop and think. By making people laugh. By
humanising and normalising disability. By tackling taboo topics and hopefully
removing some of the stigma attached to disability related issues.
So far I have covered some of the funnier experiences that have
arisen as a direct result of my disability. I have shared about my search for
love and acceptance. I have written about some of the downright ridiculous
situations I have found myself in.
But today I want to share about something a bit grittier. Something
people with disabilities are often embarrassed to mention for fear of making
others feel awkward. Tonight I want to share a little bit about life with
chronic pain. Something I live with on a daily basis.
Right now I am in the middle of a particularly fierce battle
with pain. It’s a war (for want of a better word) which has rumbled on for as
long as I can remember, but which has intensified over the last decade as I have
experienced a number of complications both post-operatively and as a result of
the increasing demands placed on my body as I have grown. Acute, traumatic, nociceptive,
neuropathic, mechanical, visceral. All words used by healthcare professionals
to describe the pain I have experienced over the years. Words which never quite
seem to hit the nail on the head in terms of defining the impact such pain has
on the functioning of a person.
So let me tell you a little bit about life with chronic pain.
Pain is an indecisive beast; no two days are the same. Some
days the beast can be quiet (ish). Other days it feels like a hippo is tap
dancing through your body. Whilst wearing stilettos. Whichever sort of day it
is, there will always be a consistent nagging pain which never quite leaves
The thing with chronic pain is that you go through phases.
Phases where things feel vaguely manageable and phases where everything seems
horrendous. Unfortunately the last few weeks have been the latter. It has
genuinely felt like a whole troop of hippos have been practising for a dance
show, stamping their pointy stiletto-wearing feet throughout my entire body!
Nevertheless, life has continued. In case you didn’t know, I
have the privilege of working as a Specialist Speech and Language Therapist in
neuro-rehabilitation. This means that I have the opportunity to get to work
with some incredible individuals who have experienced illness and injury we can
only imagine. One such patient commented to me last week that I appeared more
subdued than normal, and that my smile “didn’t quite meet your eyes today”. She
asked me why and I told her that I was in quite a lot of pain that day. She
smiled and commented that she’s slowly learning to live with her newly acquired
chronic pain (post nerve injury) but that her family were having a difficult
time getting their head around it. We talked about the things we would want
people to understand about chronic pain and I thought I would share a few of
our thoughts. In no particular order…
1. We’re not trying to be grumpy, we promise
The thing with chronic pain is that it is UTTERLY
EXHAUSTING. I’m not talking “a little bit tiring”, I’m talking the kind of
tiredness that no amount of sleep seems to cure. The kind of tired which makes
every single atom of your body ache and cry out for bed time. However when that
blissful moment of crawling into bed finally arrives, it seems that every pain
fibre in your body chooses that moment to come alive once more. Your friend the
tap dancing, stiletto wearing hippo of pain puts on his sharpest heels and has
a boogie around your body. Cheeky bugger.
So when we get up the next morning feeling totally unrefreshed, please
don’t take our grumpy and aloof behaviour as a sign that you’ve done something
wrong or that we are in a mood with you. It probably just means we are
Words of advice from
my fiancé George: “In this situation, I just throw chocolate at Em and run away”
Note from Emily: “It
2. Being in pain does not stop us from wanting to look
“But you look great?!” is a phrase I often hear when I’m asked
about my pain levels or how well my ongoing medical issues are being managed. Taking
an interest in my appearance - doing my hair and putting make up on each day - is
all part of helping me to feel “normal” and allows me an element of control
over what can be an unpredictable journey with chronic pain. On really bad days, doing my hair and putting
my make-up on is akin to gearing up for battle with make-up my war paint and a
pretty top my body armour. Just because someone’s make-up is immaculate and they
don’t look poorly doesn’t mean they’re not struggling. That being said,
weekends are often a chance to just totally switch off from the world and I’m
regularly seen sporting a massive hoodie with my hair scraped back from my face!
The public is not quite ready for that sight…
3. “Just take another paracetamol” will not work!
I promise you that if a person with chronic pain could end
their pain by taking just one more paracetamol, they would race you to the
medicine cupboard! Fact of the day.
4. Pain does not stop us from smiling (well not all
of the time)
People who don’t know me well have often been heard to say
“but she smiles so much, surely it can’t be that bad?” The truth is this - the
presence or absence of a smile is not a reliable indicator of the pain levels
of a person. I have been fortunate to have grown in a family purporting the
power of the “positive mental attitude”. Throughout the challenges and triumphs
of the last 26 years we as a family have found that smiling and laughing is not
just good for us physically, but is good for us psychologically. Any person with
chronic pain (and their friends and family) will tell you that the biggest
battle with chronic pain is the psychological one and that this is where the
battle is won or lost.
5. We’re not “sufferers”
You may have noticed that throughout this post I have
avoided using the phrase “chronic pain sufferer”. This is something I have done
deliberately. My patient pointed out very eloquently “I’m not a sufferer, pain
is not something which is done to me.
It is something I experience. But I also experience joy, happiness and success.
Our pain does not define us”.
I could not have put it better myself.
6. We’re not being anti-social, we’ve probably just
run out of spoons
A lady by the name of Christine Miserandino penned “The
Spoon Theory”, a wonderfully apt description of what it is like to live with a
disability. She explains that each person with a disability is given a finite
number of spoons for a day, with spoons serving as a form of currency to be
spent in order to complete daily tasks. Each task needing to be completed costs
a spoon. Whether this is as trivial as getting out of bed or climbing the
stairs or as big as giving a presentation at work, each of these tasks has a
cost measured in spoons. Whereas our more able bodied counterparts have an
infinite number of spoons, a person with a disability does not. Every little
action, movement or choice costs the person with a disability a spoon. Staying
up late to watch a movie with friends will use up precious spoons meaning that
we might find it ten times harder to get dressed the following day. Overstretching
ourselves to go to a friend’s birthday dinner at the end of a long working week
will mean that we run out that day’s spoon allocation and have to eat into
tomorrow’s spoons. Too tired to drive home, we have to hail a cab. So although
it may come across as us being lazy or flaky when we cancel at the last minute,
it may just be that for whatever reason, we have run out of spoons. It doesn’t
mean that we don’t want to see you. Chances are, we are sitting on our sofa
wishing we were with you.
Thank you for reading this far! I hope that you have found
this post vaguely insightful - I’d love to hear from you if you have any
thoughts or questions.
p.s. please follow this link to read more about “spoon