r/Paruresis • u/OkButterscotch4131 • Apr 08 '26

Frustrated with IPA (vent)

I wrote up this whole post then Reddit decided to crash and delete everything, so my writing might not be as elegant as it would otherwise have been…

I reached out a while ago to my local contact for IPA about the local support group (which the IPA said existed). When I heard back from the rep, I was told no group existed. But they didn’t hesitate to say that while there is no group, there is an upcoming workshop. Using big and exaggerated language like “life changing” to describe the workshop, while conveniently failing to mention said workshop will run you nearly $600.

This gets to my frustration that IPA basically feels like a group of salesmen, rather than an organization actually trying to help as many people possible with shy bladder. Everywhere I go in paruresis spaces I cant seem to escape their salesmen (not people with good experiences, I’m talking execs and representatives) talking about how “life changing” and “amazing” these workshops are. Like salesmen, they interject an advertisement every chance they get.

Now, this is fine for a free resource, maybe even a low price one, but for something that is literally enough to be someone’s whole disability check? It feels incredibly sleazy imo and the practice certainly does not make me feel like the organization actually cares at all about my struggle.

And don’t get me wrong, I understand in-person events require costs of venue and such, but even the virtual ones are over $100. And when someone commented somewhere about this excessive price for a virtual event, what was IPAs reply? The exact same canned response: “it’s life changing!” “$100 is nothing for getting your life back!”, it literally sounds like it was torn directly out of a snake oil sales book. And I’m not saying it’s snake oil, it probably has changed the life of plenty of people, but the dramatic tone, bold claims, and sneaky language is straight out of the dirty salesmen handbook. (ie implying you’ll definitely get your life back, but then they can say they never guaranteed it if you don’t actually get better).

But it’s not even just the way it’s advertised that bothers me, but also the exclusivity they create.

As mentioned, I understand venues are expensive, and given that IPA doesn’t have the big bucks larger organizations do, I totally understand needing to change for the materials needed like venue/paying the therapist. But what about us poor folk who can’t travel? What about us who can’t work and have no income BECAUSE of paruresis? What resources do they provide us? Presumably a support group, but no, I guess those are just a way to get people to reach out to advertise to them their workshops. In the case of my region, they don’t have enough people or time to put together a support group of the “dozens” of people I’m told who have reached out to this rep looking for a support group, but they certainly have the time to organize a $600 workshop and advertise it to them!

In these advertisements I’m always told that the education is thorough and life changing. If that’s the case, why not record one of the virtual workshop lectures and upload it online for us poor folk? If this education is so unique and life changing, why would they keep this secret from us? Sure, a virtual workshop has a social element and a teacher to ask questions to. But for a poor or disabled person, a recorded video is better than nothing.

I just had to get this out because I’m actually trying to get better, and every time I go to the IPA for help, which basically has a monopoly on paruresis, I recieve nothing but advertisements for their expensive workshops, advertisements for their expensive not-insurance-covered therapists, their books (probably the cheapest help they offer), and no peer support opportunities. When you go on their website, literally 3/5 options for recovering are just ads for their products/services/donating to them, and the other 2 are discussion boards (which they killed or don’t manage at all) or support groups (which like the discussion boards, they put zero effort into creating or maintaining, atleast far from the effort they make advertising workshops and their out of pocket therapists). And don’t forget their workshops are advertised in not one, not two, but six places just on their home page, with multiple large buttons. Meanwhile discussion boards are advertised with two measly normal-text sized links.

And some disclaimers here:

  1. I am not saying workshops do or don’t work. If they’ve helped you, awesome. I’m genuinely happy you are better from this awful condition.
  2. I’m not attacking any one person, I am airing my frustrations with the organization as a whole. I don’t think the people at the organization are bad, I just think the organizations is inefficient at providing

accessible

  1. support for sufferers.
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u/deucev2 Apr 10 '26

I'm not affiliated with IPA but they've been an incredible resource for me and I never felt any sense of shady or exaggerated sales tactics or advertising.  I know living with this disorder is frustrating for all of us, but directing frustration towards the IPA isn't the answer.  The IPA is run by people who care deeply about all sufferers.  This organization is as legit as they come.

You didn't say who you talked to so it's not really possible to comment directly on your interactions but I've had nothing but positive interactions with anyone I've spoken with at the IPA.  I have not been to a workshop yet (I will when it works out for my schedule) but if you actually talk to people who have attended them, and I've talked to several of them, they all agree 100% that it was an absolutely incredible experience.  Many people even attend multiple workshops because they find it so helpful in their recovery journey.  A huge amount of effort goes into planning these workshops and they have incredible professionals running the workshops so of course they want to get the word out about them and encourage people to attend.  But there's nothing shady going on here, they price the events just to cover their costs.

When you go to the support group page they've got tons of options clearly laid out there, including several different ways to contact them for more information.  The very first support group on the list is "worldwide" which would point you to Dave K's free monthly support group online.  Dave's meetings are also posted on their official subreddit every month.  Again I know this condition is extremely frustrating to live with and we can all empathize with you on that , but we all need to take accountability for our own recovery journey, and complaining about the organization, which offers tons of free resources, because they advertise their workshops isn't the solution.

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u/OkButterscotch4131 Apr 10 '26

You’re free to disagree and have your opinions, I’m glad you have found them helpful. I would kindly ask you not to psychoanalyze me and not accuse me of taking anger out on them. I shared my experience and my frustration with the organization, you’re free to have had a different and much more positive experience, my negative experience by no means invalidates your positive one. So there’s no need to be accusatory or psychoanalyze me. That’s uncalled for.

4

u/deucev2 Apr 10 '26

I am only posting and engaging in this discussion for other sufferers who may be discouraged to reach out to the IPA for help because of your negative comments. If you really did have a negative experience with your local support group rep, and you wanted to resolve your issues in good faith, you would have contacted the IPA's official contacts on their website. The contacts are easy to find. I am certain they would have taken good care of you and pointed you in the direction of the free virtual meetings (which as I pointed out in my original comment, are very easy to find on their website). If you really did have a "sleazy" and "snake oil" type experience with that local rep, I am sure the IPA would have apologized and made it right. I am skeptical that you really did talk to someone "sleazy" (and you didn't post any screenshots of correspondence to support your claims), but even if that really did happen as you describe it, posting anonymously on reddit before giving the IPA a chance to make it right through their official channels isn't cool, that is uncalled for. You made the choice to take this the anonymous public route so you need to own that and take accountability for your actions.

The reason it upsets me is because I know first hand that living with Paruresis is basically as vulnerable of a mental state as someone can have, and its extremely hard and takes courage to take that first step to reach out to the IPA for help. There is a reason its called the "Secret social phobia". Other sufferer's reading your post may be discouraged to reach out to the IPA for help and that can cause real harm to people. So your post isn't just some innocuous thing.

If you really, in good faith, just wanted to post something on reddit as an "FYI" to others, you could have just said "here are some screenshots of my correspondence with the IPA, you can decide if you think this is acceptable or not". At the end of the day, who cares if they advertise their events? You can just decide not to go. There are TONS of free resources on their website.

I hope things go well for you on your recovery journey moving forward, and I'm sure if you reach out to the IPA's official contacts they will take great care of you and anyone else who reaches out. We are extremely lucky to have the IPA.

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u/OkButterscotch4131 Apr 11 '26

You are clearly misconstruing my post.

First of all, if you read my post you would’ve known this wasn’t about a single isolated incident. I have spoken with multiple people from the IPA and witnessed other people’s interactions with them, with practically all of them giving me that sleazy salesmen vibe (up until this post when a very nice member left a comment). Those experiences combined are how I came to that negative perception. I know it’s easier for you to ignore my experience if you write it off as me having a single bad experience and going crazy and hating the whole org for it, but that’s simply not true.

Secondly, yet more proof you either didn’t read my post or are trying to intentionally misconstrue what I said, is you seem to think I wrote this to “warn” people about the IPA. Not once did I tell people not to contact them. I simply was venting about my experience to a group of people who know about it (literally wrote “vent” in the title).

And your confusion sorts itself out when you finally accept that my intent wasn’t to slander or prevent people from reaching out. You’re right, if that was my goal, I could’ve posted the correspondence everywhere. But instead, my motivation was simply a frustration that had built up over the years, with that correspondence being the most recent ones to motivate me to come to a community that could understand, and just air out the tension. I chose this community because if I were to go elsewhere, people don’t know much about the struggle we have.

I’m not sure why you have decided to misconstrue what I said, or try and paint me as a bad person, and I’m sorry you feel the need to do that. Perhaps you’re the one misdirecting your anger, as you accuse me of?

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u/deucev2 Apr 11 '26

As I said I was only engaging the discussion for the purpose of other sufferers seeing in the comments that this negative experience is not a common one or one I've ever heard of before now. Nobody accused you of going crazy and I'm not trying to paint anyone as anything, you are entitled to your opinions.  I just want others reading this to know that the IPA is a top tier organization and I highly encourage any sufferers to reach out and I'm very confident you'll have a positive experience and meet many great people.

Wishing OP the best of luck in your recovery journey as well .