i am young, in pain, and society demands that it is not possible.
– i answer to pain questions positively and i get looked at with disbelief.
– i answer to pain scores positively and i get looked at with disdain.
– i can’t talk about my pain otherwise. it isn’t wise at all.
so what happens thereafter is that…
– i am asked to describe where and what my pain is like and i look at them like they’re crazy:
-> “erm it’s just pain in my joints. it’s nothing much.”
-> “i’m experiencing a lot of pain in certain joints. that’s all.”
-> “i’m having a pain score of 7 right now.” (this one is the most unpopular)
-> “hmm. it’s just that… forget it. i’m not in pain.” (believe it or not, this happens)
it’s sad that this is reality. i am glad none of these happens in my rheumy’s room though. healthcare professionals, nurses especially, need to know that when a patient with arthritis says she is in pain, she means it. pain in my joints? it may well be 20 joints that are flaring. they should never underestimate the extent of flares in a RA patient. pain score 7? they better be gentle, not dismissive and careless. it is not easy for an arthritis patient to say that her pain score is 7, because most likely her threshold for pain is better than most lay people after years and years of suffering from the disease. i’ve shouted at nurses before, and then argue with them, because they manhandle my flaring joints, and they have no knowing what it’s like to be in that kind of pain. and if it comes to the point when the patient is hemming and hawing, and then saying “forget it”, that means they have given up trying to talk about their pain.
and i won’t even talk about how i am treated at home when i talk about my pain. it’s even sadder, and i am sure it happens with many people who live with RA.
this is life, and this is RA in Singapore.