There are so many things to be frustrated about when you live with chronic pain and / or chronic fatigue.
As soon as your pain becomes ‘chronic’, the level of explanation needed just to get across to family, friends, doctors, nurses, and healthcare workers, what you’re experiencing can mean that you spend most of your time talking about it. People get frustrated with so much dialogue, but to me at least, the repetition is born out of the listener failing to listen.
It seems no matter how much I explain my pain (Which is mostly in my joints and pelvis) the people involved in my life tend to collectively refer to my pain as bloody ‘backache’ (apologies for swearing, but it really does piss me off). And let me be clear, even my partner does it, and he’s on the frontline of my pain war.
Before I rant, I want to absolutely acknowledge how utterly debilitating back pain and back injury can be. Not for one second am I downplaying what someone with these complaints is dealing with – it can be horrific and life altering, but if it’s not what I’m experiencing, why should I accept it as the umbrella term for my problem?
Now yes, I have degenerative issues with my spine and yes, at times it can be painful. However, to be frank, the pain I experience with my back is far less than the pain in my joints and the grinding in my right hip. This is the pain I talk about mostly. This is the pain I cry about when my medication does nothing. This is the pain I will contact my GP about when it’s simply becomes too much.
Why on earth is there an unconscious bias that all pain coming from a patient who has, in the past, experienced back pain must now all be back pain?
I’m writing this post from a frustrated perspective. I guess I’ve done something to aggravate my sacroiliitis (arthritis of the sacrum/pelvis), so for the last four days my right hip area has been constant agony. And anyone who knows the chronic pain experience will understand that when I say agony, I say it knowing that my baselevel pain remains the same as it does every day and I don’t mention it. I only talk about pain that’s making life difficult – chronic pain patients put up with a lot and keep smiling through it, but we all have a limit.
The pain in my hip makes it harder for me to mobilise. It means that walking around just short distances is so unappealing that I wait as long as possible before visiting the toilet. And that’s what you do when you live with pain that’s constant. You rearrange your life to minimise any gripes as much as possible to make it through the day with minimal discomfort. However, ‘minimal discomfort’ for someone with permanent pain, might be pretty hard to live with for a lucky, pain-free human. I guess you build up a resilience over time and that resilience makes it possible for you to put the pain to one side or (at worst) look like you’re able to ignore it. We still feel it even when it looks like we’re fine, and the same is true of mental illness.
I have a condition (which I’ve mentioned before) called Ehlers Danlos syndrome, and it means that my joints are easily aggravated and can dislocate with minimal movement. For example, my tailbone pops out of place multiple times a day just because I’m sat on the toilet seat. That pan hole intended for a different reason is the perfect environment for that tiny bone to cause maximum pain. The syndrome also causes me swelling, again, without a big trigger, so simply typing articles like this one turns my fingers red and sore and makes my wrists very stiff. Thankfully, dictation software has been invented, but it does mean the quality of my writing seems to have gone downhill (sorry, not sorry).
Does any of this sound like bloody backache? No!
I’ve become so frustrated with the unquestioned bias that all my pain should be placed under the umbrella term ‘backache’, that I now correct people when they suggest it. Yes it makes me sound like a pedantic old cow, but when you’re talking to someone who’s supposed to understand your pain and they make a comment that feels stigmatic, it’s only right that it’s corrected. Why? Well, if for no other reason than to help you get the appropriate intervention and get rid of the real pain you experiencing.
But while I moan about backache and get frustrated over poor use of health-related language, the unconscious biases that other people experience can be much more severe and dangerous.
The ME/CFS community find themselves constantly stigmatised over whether the pain they experience is real or psychological, even though they are diagnosed with this very real and very painful neurological condition. I can confirm that the pain and fatigue caused by CFS is completely real and should never be questioned, but even here in the UK, even though the science behind the condition has been proven and confirms that it is not a mental illness, there are people diagnosed who die while health professionals argue with relatives over the ‘real’ cause of their pain and what intervention is appropriate.
These antiquated attitudes towards chronic fatigue are leaving people without healthcare, and in so much pain that they can’t eat, they can’t sleep… they can’t even drink fluid.
I wrote a poem about this recently, which can be found on my blog, along with more information about these tragedies that shockingly happened very recently.
I wish that medical interventions involved less bias, less stereotyping, and more consideration of medical research, and the facts that the patient is outlining right in front of them. We are relying on ill-informed opinions, which can be deadly and psychologically dangerous. Why make a patient feel worse by ignoring their clear explanation of their experience and applying your own opinion instead?
As I said before, applying an incorrect opinion to someone’s pain experience isn’t always a sarcastic laugh (like saying I have ‘backache again’), sometimes it’s dangerous.
So, in conclusion, even if you’re not a healthcare professional, if you’re just a friend or relative to someone who experiences chronic pain and talks about it to you – please know we are aware that some of us talk about our pain a lot. Sometimes that over-sharing is actually a result of not being heard rather than simply talking too much.
After all, every patient experiencing this type of chronic illness just wants to feel heard, just wants to feel understood, just wants to feel seen, and absolutely does NOT want all of their pain to be evaporated into a neat package as if it’s ‘all backache’ or ‘all in our heads’.
If you’re looking for somewhere to get advice and information on how to support yourself or support someone you know with ME/CFS, Ehlers Danlos syndrome, or any other chronic pain complaint, please visit the Get Support page on my website, where there is a comprehensive list of charities and organisations that can offer you help.
I hope your day runs as smoothly as possible and that you manage to keep your pain to a minimum. Thanks for reading ❤️
Creative Steph 