I follow a lot of pain blogs online and am in online support
groups. I regularly speak to people struggling with chronic pain. One of the
most common struggles people have is a feeling that those around them have
little understanding of what they are going through. It sure can be frustrating
and results in feeling misunderstood and isolated. Chronic pain is often
referred to as an invisible illness because there does not seem to be any
outward presentation or indication of how much a person may be suffering on the
inside. I would like to offer two solutions to help destigmatise pain and
improve understanding. I am offering this blog in preparation for National Pain Week
which aims to
1. To de-stigmatise the experience of chronic pain
2. Promote current thinking to explain chronic pain to the wider
Australian community
3. Create healing relationships between the person in pain and their
pain clinician/s
4. Reduce the isolation and suffering of people in pain.
So here are my suggestions:
1. Dishing up some
reality pie.
We all have stuff we need to get done. Work, social
responsibilities, family and friends. Often these commitments will pull on our
attention and time. But the reality is pain interrupts our ability to do some
of these things. I am sure people with pain would not deny that. Finding some
kind of balance between these responsibilities and our physical limitations is
a challenge. Is it time to get real?
When we struggle with all our commitments we place high
expectations on ourselves. Often these expectations come from comparison to
others. We will often compare the worst of ourselves (think a high pain flare
day) with the best of someone else (think their glossy Facebook status or photo
shopped gym snap). These comparisons can get you down. We find ourselves
attached to some unrealistic version or vision for ourselves, one that may not
fully take our limitations into account. Attachment to this idea of what we
“should” be doing can cause a lot of frustration, anxiety and stress. All of
which may add to our pain. I have written about the dangers of comparisons
before. What if we were kind to
ourselves? What if we accepted that we have a chronic condition that may inhibit
our ability to do certain things? What if we focused on the little things, the
small achievements and celebrated those? If we were able to flip to this kind
of mindset, think how this would alter our experience of pain. I am definitely
not saying this is an easy thing to do – believe me, it is something I am
continually working on, but over time, with practice and self-compassion it can
be done.
Here’s another way of looking at it. My son recently is
grappling with the issue of being “cool” versus being “himself”. The “cool”
kids at his school play rough and swear but he knows that is not the right
thing to do. Yes, strangely profound for an 8 year old but I think those of us
with chronic pain have a similar dilemma. We want to be like the cool kids,
those active, fast-paced achievers. You know those people who can do
everything. But I am someone with chronic pain, my capabilities are limited. In
my race to keep up with the cool kids I will risk overdoing it, increasing my
pain and living a deception. As a people pleaser, I often feel myself in the
same battle as my son – do I pretend I can do everything or do I be myself and
do things my way?. I self manage chronic pain so my personal standards are
about putting my health first, working within my limits and not overdoing it.
To live by those standards, it often means saying a polite “no”. The more real
we are and true to ourselves, the less likely we are to run into the trouble of
keeping up with the cool kids because, in the long run, the cost of this is too
high.
Chinese proverb “ Tension is who you think you should be. Relaxation is who you are”
Right, I will admit, “keeping it real” is not easy but here
are some ideas for helping to achieve this:
Set regular, realistic goals – these might be in a short or
long term timeframe or they might be a simple goal for the day. By setting
goals we give ourselves some direction and purpose and a reason for celebrating
when we reach certain milestones. It is important that we keep these realistic
and within our limits or capabilities. Remember all those responsibilities and
commitments? Setting goals allows us to put these in perspective and break down
the necessary ones into smaller, manageable chunks. Sounds a bit like pacing
doesn’t it? It works.
Pick your battles – following on from the need to prioritise
and set goals is the ability to filter through your roles and responsibilities
and pick the ones that are going to work for you, in this moment, on this day.
Somethings are just not worth the effort or the fight and might need to be put
aside. It doesn’t mean never doing that thing, but you might just decide that,
today, for whatever reason, that is not the best path for you.
Ditch the superhero complex - When people ask how you are
going, do you often say “I am so busy”!? I know I do. But why do we think that
is a mark of success? Maybe taking mindful pauses and some time out for self
care is just as important as all those other things on the to-do list. What we
might like to get done and what we are physically able to get done might be two
totally different things. Remember that by overdoing it we will often cause a
pain flare. If we decide to do less we can actually do more. Yes, that sounds
crazy but if we rationally plod away through our day, taking breaks, setting
realistic goals, we can manage pain and avoid flare ups. By powering through
and conquering the world in an attempt to be a superhero, we are likely to get
burnt out, tired, increase pain and stress/emotion. Slow down, take breaks and
be a tortoise.
2. Honest conversations promote understanding
"You always cancel at the last minute." "You don’t look sick." I
have found a way to stop getting frustrated at responses like this from well-meaning
friends/family who may not understand your situation - Tell them the truth!
When people ask how you are going, do you answer “I’m fine.”? Well guess what?
You cannot have it both ways. You cannot tell someone you are fine and then begrudge
them for not understanding your situation. I often hear people glorify their
acting skills when in pain (and I used to do this – all the time!) but in pretending
we are fine, people never know what it is really like to live with pain. In the
long run, wouldn’t it be better to be honest and simply respond with “today, my
pain is bothering me” or go on to explain how it feels for you “when I have a pain
flare my body feels like is made of lead so all movement and activity is a real
struggle”. And rather than just stating how you feel, you can ask for help or
tell the person what they could do to allow you to help yourself. Of course,
here I mean talking honestly with your loved ones and those closest to you – I
am pretty sure every person you speak to from the postman to the salesgirl at
the checkout does not need to know the ins and outs of your health journey!
And here is where this blogpost goes full circle. What if…we
had a realistic expectations AND we told the truth. We would not pretend to be
well and happy when we are clearly not. We would educate those around us by
decreasing the stigma and increasing the understanding of living with pain. We
have the chance to live more at ease with ourselves and with those around us.
Be real. Be honest. Live Well. Change – it’s in you.
I would love to hear your thoughts and feedback on this - do you think this would help destigmatise pain? Do you eat reality pie and speak honestly? I would love to hear from you!
