What does hiding this condition cost us?

I’m never quite sure how to phrase it when I tell someone about what I’m going through with paruresis. Saying it’s a “condition” makes it feel like something I’m carrying around and can’t put down. Like a curse. Paruresis doesn’t quite feel that way to me anymore, especially now that I’ve made some real progress. It feels like something I’m actively doing, and something I can get over. So I say I’m “experiencing” paruresis, not that I “have” it. I know that’s semantics, but it feels important.

I meet up with a friend every Saturday morning. We talk about how our week went and what our goals are for the next week. I’ve been telling him for a while that I was working on something consistently, posting on Reddit about it, all that. But I never told him what it actually was. Mostly because I was embarrassed.

Last Saturday I told him the whole thing. How long I’ve been dealing with it, how far I’ve come, the victory I had last week, finally going at a urinal next to another guy for the first time in 30 years.

His reaction surprised the hell out of me. He told me he’d experienced the same thing for most of his childhood. He’d hold it all day at school and not go until he got home. It was painful, miserable. Years later he got an aggressive form of cancer, and was in the hospital, super sick, just feeling terrible. He was able to let go of the anxiety and worry of the paruresis because he just didn’t care anymore. There was something bigger to worry about.

I guess that’s one way to fix it. Not one I’d recommend.

Telling him went better than I expected. He was immediately supportive and proud of me. It meant a lot.

I still haven’t told most of the people in my life, though. Part of my hesitation is that I’ve hidden this for so long, even from people who are very close to me, and I’m afraid they’ll feel like they did something wrong. Like they should have known, or I should have trusted them with it sooner. But I know that’s an excuse. The more open I am about this, the easier it becomes.

The second person I told this week did laugh at first. She’d never had this problem herself, and honestly, there is something a little comedic about it on the surface. It’s kind of a silly-sounding problem.

But then I went deeper into what it actually feels like. The intensity, the way it can shape your whole day, how rough it gets for people who really suffer with it. She went from laughing to feeling pretty bad. That’s part of what’s hard about this condition. To people who haven’t experienced it, it sounds almost unfathomable. Everybody goes to the bathroom. Why would that be hard? But it is. It’s real, it affects us, and it’s hard as hell.

I think it’d be worth raising more awareness about it. There are a ridiculous number of people who don’t even know this exists, and for a lot of people experiencing it, it feels like they’re the only one.

Has anyone else here told people in their life about what they’re going through? In my experience, being open about it has brought way more support than I expected. And honestly, how can anyone support you if they don’t even know you’re going through it?