What You Can Do to Help Someone with Chronic Pain

10 things people with chronic pain wish you understood

According to the Australian Institute for Health & Welfare chronic pain (ie: pain that lasts beyond normal healing time) is experienced by 1 in 5 people over the age of 45 and is being diagnosed at an increasing rate. It can result from injury, surgery, medical conditions and sometimes there may be no apparent cause. It is more likely to be suffered by women — although that hasn’t been rigorously researched enough to understand exactly why (given that almost all clinical research was done on men until 2016, it’s little wonder). But more than enough men from suffer it too.

Although these are Australian statistics, global stats also follow along similar lines. So, if that many people suffer from it, it behooves anyone that doesn’t currently suffer from it to understand what all the fuss is about because chances are, you will or someone in your family or your close social circle will at some point.

Since my own life-changing accident (being hit by a car as a pedestrian) four years ago, I have been subjected to all sorts of commentary about my pain. Some of the most misinformed has come from the medical profession who really need to work harder to understand their patients. In fact, the broader medical profession’s total lack of understanding of chronic pain is quite disturbing. And, as you might expect, a lot of ‘opinion’ has come from well meaning people who also don’t have a clue. It’s incredibly easy to be judgemental if you’ve not actually walked a mile in someone else’s shoes. If you know someone who struggles with chronic pain, please, I beg you, don’t be that person.

I should state for the record, I, like many of my fellow pain sufferers, do not want or need your pity — just some understanding. Aside from my pain, I’m lucky enough to have a reasonably functional life, a comfy home, a husband and children I love and a business I’ve run for more than a decade. But there are days when I would give that all of that up just to make the pain stop.

Here’s what you need to know to support a person with chronic pain with suggestions in italics.

1. It’s super tiring to just get through the day. We don’t even have to do anything particular to hit defcon level 5 exhaustion. Just spending time in pain is tiring. Just think about women who give birth. 10-30 hours of mostly one-off pain (that they know will end and that their pain is for a reason) and they’re exhausted. Enough to want to sleep for a week or so (and have people take care of them for a bit). Yep, that’s everyday for someone with chronic pain, especially if they’re suffering from a flare-up. But many of us, also occupy a caring role in our families, so being taken care of doesn’t happen often. Sometimes, not even by ourselves. Encourage us (even help us) to look after ourselves.
2. Chronic pain isn’t anything like the tennis elbow you (or your cousin/aunt/neighbour) had for a couple of weeks a few years ago. Chronic pain isn’t diagnosed as ‘chronic pain’ until you’ve been suffering from it for at least 3–12 months (usually at least six). It doesn’t ease up with a bit of physical therapy or a day or two/week of anti-inflammatories. It’s the ongoingness of the pain for months and months at a time that fries your brain circuits and makes you generally cranky at the world. Please don’t compare.
3. People with chronic pain have tried almost everything to make their pain go away, or at least be more bearable. And yes, I mean just about everything — meds, talk therapies, alternative therapies, meditation, prayer, yoga, tai chi, swimming, walking (for those that are able), spending time in the sunshine, religion, gratitude, particular pillows, rubs, cold showers, heat packs, napping, working more to drown out the pain, working less to minimise the pain, etc, you name it. Some things work better than others or in conjunction with others. But many just don’t and sometimes there’s no rhyme or reason to it — it’s different strokes for different folks. Allow us to work through the list of options at our own pace. Please don’t blame us for something we’re trying causing a flare. Sometimes it feels important that we’re just trying to regain a level of control (even if it doesn’t work). We’re just doing the best we can.
4. We REALLY don’t need you judging our medication or reminding us that pain meds can be addictive. Yep, we already know that. BUT, did YOU know, that know it’s only around 20% of the population whose brain dopamine receptors light up when they think (yes, just think) about taking narcotic drugs that are likely to be affected by addiction. That doesn’t happen for me. I could take them or leave them for any resulting high/low — which generally makes me feel nasty, but that they take the pain away or reduce it to below a 6 so I can work or make dinner for my family, happy days. Please don’t judge or suggest when it comes to medications unless you’re a health professional with an understanding of chronic pain or a fellow chronic pain sufferer.
5. There are 10 levels of pain according to the global pain scale. Most people who experience ‘pain’, experience something around 1–5 for a small period of time — think hours/day or two/maybe a week if you’ve bruised/strained/sprained something. Those of us with chronic pain experience days, weeks, months, years of pain from 4–8/9, sometimes 10 — the worst pain you can imagine where your brain goes into total freefall mode — all you can do is brace to get through the pain. This was me last week, I woke up screaming in agony and woke up the rest of the household with my screams. I was so frightened (remember I’ve already done four years of really nasty pain, but this was the worst pain, I’ve ever experienced — yes, including child birth) that I didn’t want to sleep lest it happen again. Ask where someone’s pain level is. Maybe hold their hand if it’s above a 5.
6. We would rather chew off our own arm that have a day where our pain soars to anything above a 6/10 on the pain scale — that kind of pain, gnores at your soul. Even 4–6/10 is enough to start really interfering your ability to do ordinary things like make dinner or write that work report — especially if pain has also been interfering with your sleep. We don’t want or need your’s or anyone’s pity, just for our pain to go away. See point 5.
7. Just because we don’t ‘look’ injured, aka, I’m not in a wheelchair or have walking aids (any longer), doesn’t mean we’re making the pain/disability up. I have a disability pass for my car. Yet to look at me, I’m young(ish) and some days, I walk like a regular human. But how I start out my trip to the shops or cafe, might not be how it finishes. And some days, I can’t even get into my car if I’m not in a wider parking spot where I can open the door as wide as it goes, just to take a bit of a ‘leap’ with my bung leg to get it up into the car. Please don’t judge, yell at me, take my photo and threaten to call the authorities because I don’t ‘look’ like you think I should. Disability comes in all abilities, flavours, shapes, sizes, ages, etc.
8. We don’t need to ‘go for a walk’ or ‘try yoga’ or see a mental health professional. We’ve most likely all been there and tried some version of that — or wished we could. If you say these words to a person living with chronic pain, you will, at best, receive a wan smile or an eye roll. At worst, depending on that person’s energy levels, you might receive a healthy telling off, instead, probably whilst they imagine a: punching you and b: transferring their pain to you, to see how you’d cope — told you we could be cranky. Instead, point us to something funny, amusing, beautiful, etc that might take our minds off today.
9. Chronic pain takes its toll on our families and it limits what we can experience with them. And that kills us. Check in with them and see how they’re doing. It’s harder than it needs to be for them — especially if they’re kids.
10. Those with chronic pain, often cut themselves off from their social circles. But not because they want to. It can be hard to get to or sit at a lunch/dinner table. Rather, sometimes, it’s not just the physical aspect of meeting up, but being able to keep up with conversation if your meds have just kicked in or the pain is escalating. But worse, it can be soul destroying to listen to everyone else talk excitedly about all the goings on in their lives, things they’re doing, their plans for the future — the things that used to be a part of your life, before chronic pain. It sometimes feels like you’ve nothing to contribute to the conversation at all aside from smiling and nodding — whilst you try not to cry on the inside. Some days it’s harder than others. Do not give up on us. Keep inviting us to stuff. Keep making it okay for us to show up however we are that day.

What else CAN you do to help?

If you’ve got a friend, family member or neighbour who suffers chronic pain and you want to be helpful, help them. Don’t ask how you can help, just DO something. Make them a meal. Take them out somewhere that their mobility allows. Go visit with them at home and put on a load of washing or hang it out to dry. Take their dog for a walk. Bring them an amazing brownie, or sweet smelling flower or a great book/magazine/playlist. Or if you’re not nearby, call them and actually talk to them. It doesn’t have be an hour’s conversation, just a hey, I was thinking about you.

Best of all just hang out with us — but realise our attention span might be limited and don’t stay for hours, unless you’re prepared to just hang, read your book or chill with Netflix and make your own cups of tea. We’d love that.

Please just don’t ‘expect’ anything from us — we’re already doing the best we can with whatever we’re working with on any given day.

I really appreciate you reading my work. I’d love it if you clapped it too. It lets more people see it — maybe even someone who desperately needs it to get their life back on track.