"My whole life for the past 14 years has been one long slide into humiliation and rage."
Thinking about the fact that it's 14 years since I really started to fall apart health-wise. And while there have been varying parts that have been steeper slide than others, I feel like humiliation and rage are both pretty damn perpetual feelings when you have severe Crohn's.
Humiliation? The soft kind, like feeling humiliated because you're left out of things because you've been unable to go along for a while so you're dropped, forgotten. The hard kind, like making sure your half hour walk to work has at least five public bathrooms along the way. Like dealing with a temporary colostomy at 23. Like having your bag leak the second time you sleep with someone. Like wearing period undies every day not because you're menstruating but because you can't trust your gut not to let you down.
Rage? At all of the above. At the way that your twenties were stolen from you and your thirties are still unpredictable at beat. At the 'oh IBD? yeah I have IBS too' replies. At the having to soothe your mother through the possibility that she might need an ostomy (at 71). At feeling so behind on life because of all of the above. At not being able to take any over the counter painkillers besides panadol. At not having the ability to spend extensive time overseas because of your medical needs and expensive drugs.
I try not let my Crohn's control my life or to focus on it too much. Or if I do, I try to focus on the fact that I haven't needed surgery in 9 years. Or that I haven't been hospitalised for a couple of years now. But days like today, with no obvious trigger, with no cooperation after dosing on loperamir and tramadol... I just want to scream.
And Raffi's words ring really fucking true.
