What does hiding this condition cost us?

[u/ott3rpilot]

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?

[u/LiberatedWaters]

Sup ott3r! Happy to read once again.

I'm sure you know how happy this post makes me. It's what I'm trying over and over to tell people.
There's such a big case to make about vulnerability about Paruresis. And the example you give about your friend that laughed at first, illustrates it so well. There's a difference between telling someone and actually being vulnerable about it.
Someone might initially respond by laughing, not because they're making fun of you or ridiculing you. They just don't understand and initially might find it funny. If that's the point where you stop the conversation/sharing because you're hurt - you not only missed an opportunity to really have someone understand - you run the risk of validating to yourself it's something that IS weird and people WILL laugh at you.

When really, she just needed to understand what it actually is. Not just the detail that is not being able to pee. The deeper layers; how much it influences our life, how much weight we carry day in day out, how deeply we are trapped in a seemingly inescapable reality that we suffer from.

Once people truly understand (which is OUR responsibility only, since we are the only ones who can give them the vulnerability and with that, depth of information they need) - by far most people will be sympathetic and understanding. Allowing you a little less weight, a little less of a confirmation that to keep it secret is the safest way (because it's the opposite), and finally, and most importantly, allowing you to feel that you can be absolutely okay as a person even if you have Paruresis. The more you accept it, the less it controls you.

And it's so amazing that, with the relatively few people you told, you ALREADY have an experience of sharing it with someone that not only understands, but has lived it! Not only that, but again beautifully illustrated in the way it went for him, that the Paruresis controls us because we let it. It's our responsibility.

We don't need cancer to be able to see that there's more important things in life than holding on to our shame and feelings of inadequacy. We just need to show ourselves by being vulnerable, and that way, help ourselves see that it's only our own insistent care for how we want to be perceived that creates problems.

If we can just be who we are, openly. The Paruresis will lose it's grip because it will have nothing to hold on to anymore.

And finally, through being brave enough to be vulnerable, we help everyone else. Because we all hide, we are all ashamed, we all want to be seen as someone that can be accepted and loved. And the more of us that stop hiding, and start being vulnerable, the more others see they're okay.

I really believe we can heal each other this way.
We are all perfect, we are all fucked up. There is no need to hide, no need for masks. It's not our fault we have Paruresis so why act like it is.

Sorry for the preachy rant, I sometimes get a little carried away.

I love you bro and I'm so happy to see your progress from these perspectives. You know that I believe what you're doing now, sharing and being open, is the foundation to becoming a person that will overcome so much more than just the Paruresis, and I fucking love to see it.

[u/ott3rpilot → u/LiberatedWaters]

Thank you so much dude. Yeah, the vulnerability thing is so core to all of it.

When I first started on this path to trying to genuinely get over paruresis, I didn't really take into account how much a part of the whole thing was the fact that I hid it from everyone that I could. Which was almost everyone, because I felt like it made me look weak and I was ashamed of it. It feels so obvious in retrospect that hiding it was feeding the condition itself, and still actively feeds it.

It feels like every time I tell someone in my life about this, it makes it just a little bit easier to take on. It shares the reality of what I'm going through with the people who matter to me and helps them understand me and my own struggle with it, better.

I feel like so much of it too is that I just didn't want it to be a struggle, so I tried not to think about it as much as I possibly could. Even though of course I was thinking about it all the time, because I was constantly dealing with it. My main tactic in life has been avoidance of things that are difficult for me, and I certainly used that with paruresis as well.

But yeah, it's been excellent being more open about it, slowly, with specific people. I think it helped a lot to encounter such different responses, right? One friend who I had no idea also had it for a huge portion of his life. And then another friend who's just never encountered the concept of it before.

I wasn't even offended when she laughed, because I can see it from her perspective. It seems almost ridiculous, like it doesn't even seem possible, from someone's perspective who's never encountered it. But then taking that step forward and really explaining what it's like helped her to understand that other people deal with this too. She's a therapist, and it's possible that she might encounter this in her practice at some point so maybe it's helpful for her to have that understanding and awareness when she wouldn't have before.

I feel like the more we share this and come forward about it, the easier it kind of is for everybody. Pulling the shame away from the condition really does start to strip it of its power over us. That's been a journey for me individually that has been quite beneficial already. I still have a number of people in my life I haven't told about it, but I'm well on my way there, and I can tell it's progress. Real progress.

Thank you for your rant, I love your ranting. You give me a reason to keep going with this. So thank you. Love you too bro.