Posted by Andrew on 4/11/2009, 10:32 am, in reply to "Re: Nobody knows about paruresis =("
I can understand your pain and your frustration at the seeming lack of knowledge about this condition in the medical world. However I must clarify a few points about this and about the IPA, because you are saying some things that are just not true.
You mention erectile dysfunction; yes it is in the public arena now, but do not ignore how long it has taken to get there. Men have been having this problem for ever, yet it went public only in the 1990s? This applies also to testicular cancer and male breast cancer.
The medical profession gets to know about something when patients arrive in sufficient numbers. Our advisor calls it the secret phobia, because sufferers do not want to disclose. Catch 22.
OK it was first researched and named in the early 1950s in the USA, and published in the Journal of General Psychology. So some psychologists would read it; but in the absence of patients with the condition, it soon drops out of memory.
Remember that this condition is major to anyone who had it, but is only one of a myriad of conditions that the medical fraternity has to deal with. It is also very difficult for someone, to whom peeing is seemingly a voluntary action, to grasp the impact it has both on life and mental well-being.
As for making an impact. Someone I know who runs a charity for Birth Defects said it took 10 years of well-funded promotion to get to the point where birth defects was seen as a topic in its own right justifying attention. Remember that was with serious funding by one major donor, of a subject that can be broached openly, and attracts sympathy, with a population of affected families to use a case studies, and with a full time member of staff working on the promotion.
In contrast the IPA and the UKPT have no serious funding; deal with a subject that is difficult to talk openly about, is not easily understood, and has few people who will come forward to explain how it affects them; and has no fulltime staff working on it.
In spite of that, both the IPA and the UKPT have managed to get media attention: radio slots, TV appearances, newspaper articles. It is noticeable that the terms pee shy, shy bladder etc are becoming more used viz references in soaps, blogs etc.
In the UK some serious money is being spent on promotion through a charity called AnxietyUK; it is dealing with toilet phobias as a whole, and has resulted in useful publicity.
Our feedback about the reaction of doctors (in the UK the family doctor who is a generalist is the first port of call) is one that ranges from “you’d be surprised how many men come to me with this problem”, through “I’ve heard of this but you are the first to come to me with this problem”, to bafflement and non-comprehension. The point I am making is that it is not totally unknown
I can understand that you are not happy about the IPA. However a lot of what you say is just not true. They get just enough money to run a skeleton part-time staff. They would love to do more, but cannot get the money to do it. They have however have had a lot of exposure in the media and are rightly concentrating on the USA specific problem of work-place drug testing: they are moving closer to getting the law changed. A lot of this work is done on an unpaid basis.
As for international: it was due to the IPA that similar organisations have been set up in the UK, in France and in Australia; this was the a result of their coming to these countries to run workshops. They have also held workshops in a few other countries, hoping that these countries will get themselves organized as well.
You mention profits from book sales. I think you are confusing profits made by the tiny minority of big sellers (e.g. da Vinci Code) with the tiny profit made by the rest. That book has sold probably about 10,000 copies over the last 10 years. Say a “profit” of around £10,000 or $10,000; that goes nowhere to doing anything major on a national scale.
We in the UK have considered how to get through to the medical profession; even to sending something to every doctors’ surgery. It would cost a mint of money; yet a doctor’s comment to me was “well you know we get a hell of a lot of literature sent to us” the implied comment being “and we don’t read it”.
We would like to get articles in the industry magazines; but to do that you have to have the appropriate qualification to get published. Catch 22. We did get an article published in a nursing magazine, but they approached us, not the other way round.
I could go on…but to summarise..
Please do NOT knock the efforts being made in good faith, on a mainly voluntary or part-time basis, by a small group of people who are doing their best. I know I could do more, but I do not have the time, the energy or the money to do it. And I know the others are in the same boat.
The way forward for individuals is to recognize how the condition started for them, and then to move forward and to do something about it. I realize that you live in the land of the free (aka the land where the devil takes the hindmost), which has resulted in your being trapped. I wish I could do something about it but there does not seem to be anything I can do.
Best wishes
Andrew
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