i hear both of you on this one. there are lots of things going on that are holding this site back from expanding and providing people with support comparable to paruresis.org. to my mind there are a number of reasons for this:
firstly, the site needs a revamp. the original idea for this site was based fairly closely on the ukpt (the uk paruresis trust). i slightly optimistically imagined that within a short space of time it would be up and running as a group led site, and perhaps from there move onto charity status. that hasn't happened yet. so the 'we' that is used in the literature of this site is a little misleading. the 'we' started off as me and the webmaster john. it still remains as that!
perhaps a good part of the reason it hasn't happened is because i'm rubbish at networking and admin! i think i've been in denial about it for some time now but it's true and i'm getting to a place where i can accept that without feeling shame or failure around it. maybe also i just haven't quite been ready to go into group decision making about how the site is run (even though i know this is crucial to the future credibility and usefulness of the site).
several people over the years have expressed an interest in getting more involved with taking the site forward and the services it offers, or have wanted to link up with this site because it relates to the things their sites have to offer. i haven't been able to respond adequately and proactively enough to get the best from these offers and so, sadly they have gone by the wayside (though some are perhaps still potentially retrievable).
another dynamic is that i have gone off the internet more and more. i used to be online at home but now have disconnected because i found it intrusive in the same way that i found tv could be. guess i'm just a bit of luddite at heart. and not particularly cut out for the role of moderator (my main concern as moderator now is purely to ensure that posters feel safe and that no inappropriate posts remain on the board for any length of time).
with regards to shy bowel vs shy bladder i think that whilst the two syndromes are comparable in many ways they are also different in some crucial ways. these are firstly, that shy bowel involves our bowels or intestines and these have a complex brain that governs them called the enteric nervous system (ens). the ens - or gut brain - has a large degree of autonomy from the head brain in how it goes about controlling the whole process of digestion from the point the food has passed down our throat right up to the unconsicous part of the anal sphincter. though it still relies on the head brain for info about what is going on 'out there' especially in terms of potential threats (and this is where the cognivitve side of CBT can come into its own).
it's true the bladder also has some unconscious goings-ons that clamp it up both on the bladder sphincter and on the detrusor muscle that squeezes it to make pee come out; however the gut as a control system is vastly more complex, the gut itself relates to thinking in a way that the bladder does not, the gut also relates to strong emotions, and finally it is THE site for the abosorption of life giving nourshiment into our systems (which is no mean feat given that it has to also make sure that no nasty critters get into our bodies along with the good stuff through its ultra thin intestinal walls. it is an AMAZING organ but like all complex organs it is more susceptible to going wrong. apart from shy bowel there is also IBS and this too must be looked at in conjunction with shy bowel because they often appear together and exacerbate each other.
this will all be covered much more comprehensively in my book and whilst i realise that the book is taking it's time in coming to print, i feel - and so does my editor - that taking the extra time is worth it in terms of giving sufferers of shy bowel (i.e. yourselves) a useful tool to work with on their recovery.
the second difference between shy bowel and shy bladder has -right from the time i set the site up - been the difficulty in transferring shy bladder desensitisation techniques directly to shy bowel. namely you can't bulk load like you can fluid load; you can't just pooh for a few seconds and then stop yourself like you can with shy bladder (and still have lots left to have another go and another); semi-evacuation is a real problem in shy bowel unlike with shy bladder, and poohing is a much more infrequent act than urinating. because of these and other differences, the whole avenue of setting up shy bowel workshops was much more difficult, and so this has meant that there have been no shy bowel sufferers reporting back on how much progress they have made on their shy bowel in the space of a couple of workshops and a few months desensing.
all in all, this means momentum is lost on the message board and i take my hat off to everyone who has posted however much or little they have been able to, in spite of this happening.
so... what to do?
from my side i commit to getting the book finished, and available to people through this site as soon as i can. (mid april launch is looking like it might be delayed by a couple of months.)
i also commit to asking for help. i can't run this site as effectively as i -and you - would like it to be run, so i need a volunteer (perhaps two) who wants to come onboard and complement what i can dosomeone who has the gift of being able to do administration and networking, and following up potential leads for expanding what can be offered to help and support shy bowel sufferers. not to mention more actively moderating the messageboard, welcoming new posters, and keeping it focused.
- if any of this sound like you please email me at firstname.lastname@example.org -
i also commit to revamping the site to coincide with the launch of the book.
what do you think? any ideas of your own on how you see the site going or changing?
thanks for your posts,
i appreciate the input,
finally, as you pointed out alice, i've been taken up with working on the book; this is taking all my shy bowel energies up!