I don’t get it.
My approach with my RA is to grit and bear stoically. And to never let it be an excuse to be less than mediocre. In fact with this disease, I work even harder to prove my capabilities. Because in this unfortunate world, being chronically sick is a no-no.
But my stance on putting up a facade can only be done for so much and for so long. Fine by me if it’s controlled. But when it’s poorly-controlled, that’s when cracks start forming. I start displaying signs that I’m in pain and/or stiffness and inevitably fatigued. I take longer to get out of bed. I sleep longer whenever possible. I move slower. I grimace and wince at the pain. I sigh. Basically, I seem quite pathetic. But there’s nothing pathetic about it, I feel, because that’s the real truth. It hurts. Period.
As I’ve said, being chronically sick in this world is a no-no. What more an invisible disease? And as much as the ‘truth hurts’, it seems like we cannot be in pain.
When I am truly in pain, nobody believes me. And I must say again, nobody freaking believes me. I tell them that I am in pain. I tell them them my pain score is so and so. I tell them that nothing seems to be helping with the pain. But no one believes me till I kick up a ruckus, which I really hate to do so. Even then, they still do not believe me, and they give me something to appease me. And by that I mean patronising me with chicken doses of pred or stat doses of analgesia. Which by the way works zilch for me. And so I continue to pester them. Which is by the way, very wrong because I ‘look fine’, and I am ‘just exaggerating’.
Somehow, my words magically become the only truth they’ll believe when I say ‘I’m fine’. I just have to say these 2 words, and it becomes the whole truth. My RA is ‘well-controlled’. Nevermind the elevated ESR.
If I do not say anything, then they’ll also automatically assume that it is well-controlled.
WHAT THE BLOODY FUCKING HELL???
I don’t get it. I really don’t get it.
I am chronically ill with a joint disease that causes me significant pain. But I cannot be in pain. I am not allowed to be in pain. I am met with disdain when I actually display signs of being in pain, or verbalise that I’m in pain. Ok, fine. So I keep mum. I grit and bear, even though I am dying on the inside with the pain searing through my joints. Then they’re satisfied because I don’t seem to be in pain.
And when has it become that they, strangers of the outside world, dictate whether my RA is well-controlled or not?
Why can’t it be the case of me being truly pain-free, and they satisfied that it is well-controlled? I’m not even asking for a remission you know? Why can’t it be a win-win situation?
I tell them that the pain is exacerbating my depression. I tell them that I am fucking sick of being in pain. That I am sick of taking medications yet still being in pain. That I’m sick of waiting- for meds to kick in fully, for a good day, for a remission, or even transaminitis. But they don’t fucking get it. Is it so difficult to comprehend? Which part of it actually? The fact that I’m in pain despite the meds?
I don’t fucking get it.
Oh yes. If they even begin to try to challenge me on the topic of me not taking pred, I swear I’ll fuck them upside down. I’d like to see them taking pred, putting on weight, have the world against their weight gain, developing body image issues and subsequently an eating disorder, which also robs their ability to do what they love. Yup. I’d really like to see that.
I feel like I’m getting very disillusioned with the healthcare in our country. Though that cannot be said yet because I’ve not tried hard enough.
If the next appointment with my rheumy still doesn’t work out, I’m changing rheumys. I like my rheumy a lot, but waiting 3 over years for a remission is unforgivable. Although understandably, for most of the 3 years, we’ve been trying to work our way around my disillusioned parents.
Posted from WordPress for Android