Two ideas for destigmatising chronic pain

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!