This is something I’ve been meaning to write about for a long time. While doing my dissertation before christmas I repeatedly read that most newly qualified healthcare professionals do not have a modern understanding of pain. I reviewed 9 articles for my dissertation, one common theme was the negative patient experience. Patients not feeling validated, not feeling like their doctors understood or being passed from pillar to post with no answers and very little understanding. If you’re a pain patient you’re probably nodding your head right now. If you’re a healthcare provider you might be reading this and thinking things have changed. You’re wrong.

Until I was 19 I honestly though that it was normal to be in pain every second of every day. Pain was the only state I’d ever known so that was my normal. It wasn’t until I was diagnosed with Ehlers Danlos at 19 that I realised how wrong my perception of ‘normal’ was.

Pain, for me, usually falls into a few different categories. I have a constant kind of low-level ache throughout most of my joints and muscles. I have intermittent sharp stabby pains… it’s almost a kind of twang like a tuning fork being tested on my nerves. Sharp and intense with aftershocks that tail off over a few minutes. When I stand upright for more than about two minutes I develop burning pain in my feet. It’s like standing on a super heated pavement but the burn goes straight to my bones. Along side that I have acute pain associated with the sprains, strains, subluxations and dislocations I get on a regular basis. These are usually sharp intense pains that tail off gradually over days or weeks. The sharp element takes my breath away even through it only lasts a few seconds, I can’t breathe, speak, move or even think until it eases off. The same is true for my ice pick headaches, they are called ‘ice picks’ for good reason. The headaches feel like someone has driven a spike through my face, usually only through a small isolated area but the pain is breathtaking for the 30 seconds it lasts for. Alongside these I also have proper migraines.. mine is a random mix of migraine symptoms, never the same twice. Numbness, paralysis, pins and needles, dizziness, all kinds of pain, nausea, muscle spasms, visual disturbances, sensitivity to light or sound.

I am in pain every second of every day, not just my waking hours either. Years ago I remember dreaming about being in a plane crash, in my dream I hurt my hip.. when I woke up the reason for that dream became painfully obvious. I’d dislocated my hip in my sleep, the dream was my subconscious processing the pain.

I’ve spoken to a number of people, like me, who have variable mobility or pain levels and we often have strange ‘pain dreams’. Some of dream in wheelchairs only to wake up in a pain flare.

As healthcare professionals we (and I use we since I’ll be an OT in a few months) can very easily become desensitized to our patients’ experiences. To some extent I think we have to, if a Doctor became emotionally invested in every single one of their patients they’d be an emotional wreck within a month.

As a Doctor, you might frequently hear patients describe their pain as burning or stabbing. You hear this so often that those descriptions just become words. As a patient when I describe something as a stabbing pain what I actually mean is it feels like someone is stabbing me. Just think for a second what that actually means. Analyse all the words. Imagine just how horrible that feels.

When providing healthcare it’s also important to remember that a patients’ pain doesn’t end after discharge, they have to learn to live with the pain, potentially forever. Patients with chronic pain don’t always get used to it, we just learn various pain management strategies. We cope.

As patients the experience is very different, we are emotionally invested in our case, in our appointment the only thing that should matter is us. Being a patient is often a selfish experience, it has to be. If you want to get treatment you have to advocate for yourself, healthcare professionals can’t tell you’re in pain, you have to tell them.

Being both a patient and a professional has taught me a lot, I can understand both sides of the story. Hopefully this has helped a few other people to understand too.

As always questions and comments are always welcome.

JBOT