Let’s think about this logically, shall we? If someone suffered the most horrific pain every single day WHILE carrying on with their life like their entire innards aren’t on fire, we would consider them incredibly brave, strong and maybe even inspirational to a point. Correct?
So here’s my question, why do we get treated so badly?
Pain is a wonderful thing, every chronic illness fighter will have you know. It forces out reluctant tears, shreds apart your days and strips away your energy and movement until the only way you can successfully move is well, quite frankly, by looking like you’re an 90 year old with a hunch back and a bitter taste in your mouth.
Whether it be from Fibromyalgia, Arthritis (shout out to my mama, hi), Complex Regional Pain Syndrome, Trigeminal Neuralgia, Endometriosis, Elhers Danlos Syndrome, Myalgic Encephalomyelitis, Chronic Pain Syndrome, Crohns, or any other illness that causes pain, we all deal with the pain caused in our own way. Some take painkillers, neurological or anti-inflammatory. Others prefer homeopathic, some meditation, yoga, creams, oils, supports, mobility aids, and maybe even CBD. We all have our different ways with coping with the different types of pain in the different areas scattered across our bodies.
As spoonies, we can all relate and show compassion and empathy for our fellow fighters who battle everyday; after all we know the pain all too well. However, what about everyone else? As I mentioned many, many times before, the general public have a certain way of seeing the disabled. For the most part, invisible disabilities aren’t seen to be anything important. The classic ‘I get tired too yanno’ or the ‘I have a bad back but you don’t see me lounging about the place’ are really very much a clear indicator of the lack of care given.
We’ve all had some sort of experience like this, whether it be from the clueless people we call professionals, family or friends, or strangers judging us solely because we parked in a blue badge spot. What the majority of people tend to not quite grasp is this one simple fact; we’re bloody good at hiding this stuff.
The disabled parking gets to me the most, as I mentioned in my blog post solely for the use of my blue badge. However, a good majority of the time, they’ll stare and that’s it. Unless you’re really unlucky and get some know it all, OBVOUISLY well educated on the topic of chronic illness, can identify every illness from a to z in two minutes flat medical professional with a degree in knowing everything, come up to you and ask why you’re there, they just tend to stare. Now what’s probably harder to swallow is the comments you get from friends and family, or even people you’ve just met, making light of your situation and claiming to be dealing with the exact same thing and yet they still do all this crazy stuff. Better yet, the classic ‘drama queen’ or ‘attention seeker’.
I’ll let you non disabled, healthy people in on a little secret of ours… it’s called hiding it. Every day is a fight for us. Every day I wake up feeling horrible and every night I go to bed hoping I’ll feel a little better tomorrow. The thing is, you can’t escape any of it and that’s what is so utterly heart-breaking. Every normal activity, happy moment or simple task is always being done with some sort of fatigue, pain or symptom.
It takes a lot to speak out about how we’re feeling, normally a nasty consequence of speaking out before and the reactions we received. We don’t talk about it for sympathy, pity or anything remotely like that. Personally, I have to talk about it otherwise I don’t know how long it’ll be until I can’t deal with it by myself anymore and I burst into flames or something. Pain isn’t just physically exhausting. The consequences of being a long term pain sufferer means it takes it’s toll mentally and emotionally. It’s energy draining and you’re left anxious and fed up wondering when you’ll get your next good day. Sometimes I sit and wonder how much more pain I can handle before I crack like an egg.
I guess that’s why it’s so hard to hear someone insult your pain intolerance or bravery. Every activity, second of the day and moment shared brings with it some sort of pain, but unless I describe to you the horrific feeling going on inside me constantly, which bits are on fire and which bits feel like they’re being chizzled away at with a pick and hammer, the most you’re going to know is I have a bad back. What’s even worse is on the truly crippling, cry while you brush your teeth days, we’re still expected to work or clean or cook or to pass you something and it’s truly that hardest thing at the very moment in time.
Being called an attention seeker or comparing my body to your once in a blue moon headache is rather insulting. Do you know why? Well, because this pain pushes people to their very limits, it forces them to question their existence and leaves them hopeless of a better future. These people still get up every day with a million things on their minds and a million unanswered questions in their stomachs and STILL make life happen. If you call me a drama queen for moaning I’m hurting, feel free to take a walk in my shoes. I guarantee you won’t like the walk.
This is often a bit of a sensitive subject but it’s something that needs to addressed. We shouldn’t feel ashamed for talking about how hard it is, because it is hard and that’s not something to be embarrassed about. When we don’t talk about it, we’re expected to get on with it and sometimes, that’s just too much. Without constantly depressing yourself and making it a topic of misery every 5 seconds, it shouldn’t be a taboo subject but something any one can talk about openly. It’s not something to be embarrassed about and it certainly doesn’t make any of us any weaker. It probably takes more courage to be vulnerable and allow yourself to talk and cry, then it does to ignore it and avoid it. Be kind to each other, pain comes in many shapes and forms.