fedup36, on 14 July 2010 - 05:15 PM, said:
Do they listen to people outside the USA??? I would be more than willing to rattle off a few e-mails pleading the case of us IBSers....maybe a bit of old ego boosting or something by saying how this is a worldwide problem and they could really help so many people etc etc...the sooner this hideous disease gets the proper recognition, the sooner they can start working on finding ways to help.
Unfortunately, Fedup36, I doubt they would listen to non-voters outside their own geographic districts. However, if you're serious about writing emails on behalf of IBSers, I encourage you to look for opportunities to do that in the UK-- to Parliament, Downing Street, the media, NHS, anywhere you think you may be able to influence awareness or decisions in a positive way for IBS. I don't know about in the UK, but at least in the U.S., big change on anything doesn't come along by itself. It comes from citizens organizing and saying X issue is important, and we are going to persist until the people in power pay attention. I respect the Lotronex and Zelnorm actions years ago, before my time as an IBSer, but in the time since I got IBS, other than the brief uproar over McCain on this BB, I haven't seen much serious interest at all in advocacy issues. In my opinion, that's unfortunate, because IBSers really are a huge group that could make a major impact at accelerating awareness, research, the availability of community resource, etc.if more than a small fraction of us did things like this.
Yes, "bathroom issues" are embarrassing, but at least in the U.S., IBD and colon cancer are very visible causes. People are always telling me they see advertisements for the Crohns and Colitis Foundation, I see local fundraisers for them regularly. When I was first diagnosed with IBS and looked all over for a local, in person support group (In a previous profession, I used to do this sort of thing for other people, so I know where to ask.), I never found one for IBS, but quickly found one for IBD. Just this week, in a very visible major corporate contest in which the public voted for charities to receive donations from the corporation, a grassroots gastroparesis organiation was among the winners-- not the top prize, but still, they were able to organize more than 1200 votes. Gastroparesis is a functional GI/motility disorder like IBS.
Yes, there's a stigma among certain people, IBSers are making it up, we're hysterical and neurotic, it's all in our heads. But that sort of thing happens to people with other functional pain syndromes too-- fibromyalgia and CFIDS/ME. There are several organizations concerned with each disorder in the U.S. and some are run by affected people. One of the prescription meds widely used for FM is advertised on television almost every evening during the evening news on a major channel-- and in the process, it explains the basics of FM. There is a stigma for mental illness, but I personally know many mental health advocates. There was a huge stigma for HIV, and many people who were infected hid in the closet like many IBSers, but eventually some of them came out and were able to get global public support. What are IBSers waiting for? What's stopping us from being better organized as a community to make noise for things like this? I'd really like to know. I've been asking this question of various people and on various forums ever since I got IBS myself, and I still don't know a credible answer.
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