One of the hardest things to do is define pain. Yet it’s a common aside in living with a chronic illness. It’s also vital in many cases in aiding medical professionals. They need to know the depth of our pain in order to establish how severely (and urgently) to treat us. You’ll be asked to describe pain; rate it on scale of 1-10. Often an incredibly problematic undertaking as it can be so changeable from one minute to the next. Frequently indescribable. When you are in the midst of it you can think of little else other than breathing through it; surviving the next wave.
Over the years I’ve found a variety of ways to vocalise my pain. It becomes a challenge, a game-show where there are no winners:
Nothing feels like it’s in the right place. Awkward, uncomfortable. Unnatural.
Stomach feels like a tornado, spinning, picking up everything around it and throwing it somewhere it shouldn't be.
When you cut your finger then eat a salt and vinegar crisp? That, but in my intestines.
Pain can frequently be hidden under a myriad of other, more immediately troublesome symptoms, such as fatigue, nausea, feeling faint. It can hit more severely as those symptoms improve. Like ticking of the most depressing list in history and finding you've still forgotten the thing RIGHT AT THE TOP. It can feel intense, overwhelming. It can mess with your head and make you feel like you are losing you mind. It can endure and impair every bodily function. It takes no prisoners and gives no relief. It can make you cry through sheer hopelessness and frustration.
Where do you rate that on 1-10? 11?
(Side-note: The first time I said ‘11’ when a nurse asked how I’d rate my pain, I followed it up with a terrible Spinal Tap joke then collapsed in a pool of my own vomit. Apparently. I don’t remember – I was in in pain).
When you live with a chronic illness you’ll find a LOT of people will ‘question’ your pain. Doctors, nurses, family, friends, employers, even pharmacists. They all want to know you’re not ‘faking it’ or exaggerating. They want to know you aren't trying to take an overdose; trying to get out of work; trying to seek attention – a rare few will want to know you are TREATING YOUR PAIN EFFECTIVELY. Which is GREAT. So many times since my diagnosis I've felt ashamed in asking for help with my pain.
At the very worst I was in hospital and lasted a good 6 hours on the mild concoction they’d given me for the burning in my bowels before I literally couldn't stand it. I could move, couldn't stop sobbing and was using all my energy not to scream and wake the pensioners I was sharing the ward with. When the nurse finally responded, I had to beg for pain relief which was met with a sigh and a raised eyebrow. I was tarred with whatever brush she wanted and it felt AWFUL.
It also made me acutely aware never to doubt my own pain and certainly not to deny it. I know my own body, and I know when something is wrong. Any raised eyebrows or sideways glances from others are irrelevant. It may make my face redder than a field of poppies against my will when my pain is questioned, but it won’t shame me into not properly treating it.
If your pain is an 11, or even if it’s not - you don’t have to tolerate it. And you shouldn't.