As humans we all seek understanding and empathy to our problems and the obstacles we face. Seeing is believing and when there's nothing to see it's inevitable that most of the time we don't get the understanding we desperately need or want . In the world we live in, people judge us for not meeting what their vision of pain and illness is, our struggles and obstacles no matter how big or small feel invalid because of how subtle they are. Although it shouldn't matter wither people can see them or not,because there still there even if they can't be seen but for some reason it does matter. We feel we need people to understand about our pain and illness because it's a part of who we are.
When you suffer from chronic pain it means a lot of things change and a lot of the changes that happen are invisible, you feel invisible, it's like your living behind an invisible window isolated from everyone and everything outside of it, the pain you feel is unique and personal, it cannot be seen or measured, there's no textbook or magic wand to make it better, consider yourself part of a secret group one you wished you didn't have to find or join, there's the people in the group who get it and then, there's the ones who don't. the ones who dismiss you as being over dramatic ,lazy even making a mountain out a molehill, it's hard to explain what it's like and it's even harder to imagine especially If you've never experienced it before, even people who have experienced pain in the passed have a hard time remembering, unless there unlucky enough to experience it again.
Having nerve damage in my chest its painful, it's there everyday but nobody can see the pain its hidden underneath the clothing, clothing that's a challenge to figure out, because as cheesy as it sounds a wardrobe full of clothes but nothing to wear always comes to mind because straps, buttons even wearing a certain bra exacerbates the pain more, others cannot see that dragging yourself out of bed in the morning, is a challenge because every movement hurts, others don't see that sleep is so hard to come by because the pain haunts you, you feel like you've been buried in quicksand and there's nobody there to save you, there's no escape.
when you suffer from chronic pain you don't want others to feel it or be in your shoes, you don't want them to imagine what it's all like, you just want people to acknowledge and recognise the difficulties you have, you just want to feel valid as a person with those obstacles and difficulties regardless of what is seen and what isn't.
So here I was sitting in the chair at the hospital waiting to see the pain specialist for a follow up wondering what she would say about my chest pain, the fact that things were improving but now it just feels like I'm taking 1 step forward and 5 back. Would I be hung for not taking my medication how I should or for taking more than I should just to keep things under control would I be shot for not giving the lidocaine patches a chance to numb my chest and work, it kind of feels like your in trouble for not improving.
Instead she did something I wasn't prepared for when I explained my pain was the still the same, the pain still wakes me up during the night with a pitiful smile she listened and let me carry on talking when I explained how I hate taking all this medication. Because I hate feeling out of control, I sleep but I don't feel like I've slept in days, I feel dead to the world yet I'm alive and awake, the room sways slowly from side to side even though I'm standing completely still, she told me we would go ahead with using chili pepper patches to try and desensitise the nerves, I said ok not knowing what else there's left to try if they don't work.
What came after I wasn't prepared for, She stopped writing and handed me the information booklet about the patches. as she spoke I felt this huge weight of worry suddenly lift.
" It's unfair all this happened when it probably didn't happen to anyone else that day, I know it can't be easy being young and having a pacemaker, sort time off work, sort someone to look after the baby, sort someone to be there for you, have a read and call me when your ready there's no rush just as long as your happy"
Instantly I felt my defence walls crumble, it felt like it had been years since someone did something as simple as recognising I'm a person who is in pain, recognised I'm a mum and a wife who had responsibility's, a young girl that beneath the clothing and smile still felt vulnerable, god she even acknowledge that having a pacemaker at 25 isn't easy it's completely life changing.
When you live in a society were hardly anyone has empathy and understanding to what they don't physically see validation and recognition doesn't happen often, not only did she validate me and my feelings, she recognised all the obstacles and difficulties that were there , it was like she read every thought that was running through my brain, it's like she was saying she could see them, she could feel how heavy the weight was, she even reminded me I was important I needed look after too, my body was important it needed time to heal.
It took everything in me not to cry like an idiot it was like suddenly I remembered I am in pain, I do have permanent nerve damage, I am young to have a pacemaker, I'm not dramatic, or lazy I have feelings and my feelings were important, My happiness was important.
In that small 5 minutes she reminded me I'm only human, we're all vulnerable , we all have unique circumstances outwith what we came to the hospital for, it's ok if the rest of the world can't see or understand them because she did.
She was just doing her job she helps me manage my pain, but she put my feelings of happiness before anything she wouldn't realise how much her words touched me that day, for once I felt my feelings and problems were valid I actually felt happy about the situation because she understood living life like this isn't easy.
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