www.incontinentsupport.org

To update an old thread - since I moved to the Raleigh, NC area a few months ago I have searched diligently for a support group in this metropolitan area and, to my surprise, have found nothing! As Rope searched in his area of North Carolina last year, that indicates that no such group exists at this time. With all of the well regarded medical facilities in the Raleigh area it came as a shock that although there are numerous support groups there were none for incontinence.

Though my church I quietly have offered my services in outreach to those who are incontinent and needing some information and advice re diapers . A problem is to identify a large enough population to have enough interested individuals. I am considering suggesting periodic scheduled talks to a multi-church, multi-faith, community aimed not just at those who are incontinent, but also at the parents of incontinent children and adults with elderly parents having incontinence problems. I suspect that although many elderly are in denial that they are incontinent and need to wear a "diaper," their adult children might have an interest in learning more from a talk on the subject. By working through a church-related group, it also may help to solve the problem of finding a facility for meetings and to advertise them.

I have mentioned before that I am not ashamed of my incontinence or that I have to wear a diaper. Nonetheless, it is a private matter and I do not advertise it. No one knows about my incontinence except for a very few whom I have informed. If I proceed along the lines I described above, it necessarily means that I will be "outed" to a large number of people, not just the few who attend a talk, but the many more who will read flyers or notices in church bulletins or Web pages. I must think this through carefully as, unfortunately, there could be social consequences. Despite the "charity" that church-going people of all faiths are supposed to demonstrate, they too may be affected by the social stigma that attaches to incontinence. I would rather not be known as "the old guy in the diaper" or find that people avoid sitting next to me in church.

I would like to hear some of your thoughts on this.

--John

now this is tough one, John. I can quite see how this could be quite awkward for you in the context of your church. I wonder if going via your church is a good idea, though. Could you not advertise the idea in a local clinic, hospital or the like. After all, incontinence is hardly an issue, strictly speaking, for a church.

For example, our local hospital, not much of one with only general practitioners and few services, has a lot of advertising of groups for all sorts of problems and you are more likely to reach those with problems that way. Anyone dealing with incontinence is bound to be at the doctor's sometimes and the handy notice will get seen. Of course, you may end up being identified in your church at some stage but maybe if it is done via a clinic it won't be such an obvious thing for the congregation.

(Of course, you may find Christian values in your church and people who know may well treat you as they always have done....)

Wheels,

Thanks for your excellent thoughts. The idea of working through a church-affialited group was not because of religious values, but a more pragmatic aspect of having some pre-existing and reasonably supportive structure to work with. As it hopefully would be multi-church and even multi-faith, it is likely that any meetings would not actually occur at my church. However, it would be impossible to keep this kind of thing quiet.

Re local hospitals, etc., I noticed that absolutely none had anything relating to incontinence. Possible lack of interest? Certainly a urologist is unlikely to sponsor such talks as wearing diapers is viewed as a sign of failure by many urologists.

We shall see. I have an appointment with a new urologist this week and am dreading it as my symptoms come and go and partly are likely to result from pelvic nerve damage - something that is difficult to pin down. However, that may be an opportunity with regard to finding a sponsor.

--John

It's not just diapers, John. Doctors have to face failure a lot and neurologists more than most. Like my MS - there was no treatment 30 odd years ago when I was diagnosed and there isn't much now that works. Motor neurone disease is in the same place - no treatment at all.

When I was diagnosed, the urologist brought in to help with the leaks made no bones of helping 'catch' the leaks rather than trying to treat anything - after all, it was neurological and nothing could be done. I do think doctors, though, often can't manage to face up to doing the best for the patient even if it involves helping them live with a condition rather than cure it. Maybe sometimes they don't quite realise that people who don't want a lot of drugs that work a bit choose not to as they don't get rid of the need for protection. Doctors I have dealt with have always been happy to help out in the best way for me even if that means no actual medical treatment. I wonder if this is more about how the doctors are paid for administering treatments and drugs in the USA....

Anyway, have fun with the new urologist!

Fun indeed! Thanks Wheels!

--John