IC awareness day 13: how to make people 'get it'

What would you say to a close friend or family member to try to get them to understand more about your IC struggle. Don't use anything you've ever used before. Try a completely confident approach and something that people not of our "IC world" can relate to and think outside of the box

I look women straight in the eye and say 'have you ever had cystitis / a bad UTI / soreness after sex?'. 95% of them say yes. I then say, without blinking, 'that's what it's like all the time. Only worse. Because every time I drink anything at all and my bladder fills up, it is agony, and I have to pee right now. As if you are stuck in traffic and desperate; it can take me fifteen minutes to reach that state'. That usually gets them, when it sinks in.

As for men, I ask them if they have heard of that strange little Amazonian fish that swims straight up the inside of the penis and causes extreme urinary pain, urgency and discomfort. It can even kill, rarely, though usually 'just' causes horrendous cystitis symptoms. They say no, usually, though some say yes. Always they grimace, as if they cannot imagine anything worse. 'Welcome to my world', I say.

I keep looking into their eyes; I refuse to apologise for my condition or defend myself or make out that it is less bad than it is. This approach usually works, after a while, though sometimes I just encounter total horrified disbelief. 'No, really,' I persist. 'That's just how it is. Some days are worse than others, but that's what IC is for me.'

I wish more people already knew. I wish we had to explain less and meet fewer blank stares. I wish that we didn't have to have these conversations all the time trying to justify our IC struggle. Then again, there's only one way to spread awareness, and that's to keep on talking.