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Discussion Starter · #1 ·
If so, Jeff and the moderators, would you consider giving the subject a section on the site for advocacy tips or a forum to discuss what people have done or might do along these lines to generate more public attention and encourage more of the silent majority to come out of the closet? As I've posted in the past, I'm aware that Jeff, the moderators and certain other people in the IBS community have put a lot of time, energy and resources into this site, into supporting people, raising awareness and organizing actions in the past, long before I personally had IBS. I honor that. But in the almost 2 years I have had IBS and been visiting this site, when other posters and I have periodically suggested concrete things people can do to further the cause for all of us, we've generally gotten very little response or apparent interest. Given the millions with IBS worldwide and the thousands of us on this site, I've always found that astounding and frustrating, especially compared to other health and disability groups representing conditions that are much rarer. As an example, and my impetus for posting again tonight, in a local publication, there was an article on a Crohn's and colitis awareness event and fundraiser. As I understand it, US prevalence of those is 1.4 million versus 30-60 million for IBS. Many people with IBS say that they are too embarrassed to come out of the closet, but people with Crohn's, colitis and other GI conditions often have similar symptoms and issues to many with IBS. so that cannot be the entire issue.I have some pre-IBS personal and professional experience in advocacy matters, and I would be glad to discuss the kinds of things I have already done or have considered doing as an individual to further the IBS cause for myself and all of us. But very often I feel as if I am trying to move mountains alone, and would be happy to find some like minded IBSers and tap into that for a more organized impact. A few percent of us cannot do it all, and as I've said before, this site has been very good for the day to day been there, done that kind of support. But at a certain point, it's preaching to the choir. If things are going to change, we as a community need to communicate the real deal to people without IBS, not just each other.
 

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Not sure what you want to "advocate" for??? What things specifically are you hoping to change? Perhaps if you were a bit more forthcoming with what exactly you would like to do .. more folks would respond?? idk
 

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Discussion Starter · #3 ·
BQ, thanks for your reply. I'd like to see more people with IBS openly involved in public awareness, funding and research activities on an organized basis so that there is accurate understanding among average health care professionals and the general public of what IBS is and major impact on some of us so we aren't blown off with "It's just annoying... Oh, you'll stop flaring eventually... Hypnotherapy is bogus... Nobody else with IBS has that problem (fill in whatever comments you've heard from sometimes well meaning but ill informed professionals who claim to be experienced with IBS)" My current health care providers are generally competent and try to be helpful, but within a few months of onset, I knew more about IBS than they did. Particularly because my own symptom patterns and concerns are not textbook single-symptom predominant, but I have many, both GI and non GI, most recognized by functional GI researchers like UNC but not often mentioned, I have been trying to encourage those in the community in a position to do so to mention these possibilities more, so clinicians and IBSers will be aware that not all of us fit neatly into the D, C or A box. I hope that one day our organizations and groups like this site and IFFGD have name recognition even among those who do not have IBS and greater local support systems similar to what's routinely offered to people with other chronic conditions. I'm an educated professional in a major metropolitan area with a lot of experience in helping others navigate such systems. I can tell people off the top of my head some of the resources for some of the most unknown conditions out there. But until my own abrupt onset, I had barely heard of IBS, let alone any resources. I was basically diagnosed and left to sink or swim in 24/7 agony, frantically networking, because there are none locally, and the few that there are elsewhere. very few people I know had heard of. What about all the new onset IBSers who do *not* live in major metropolitan areas and do *not* have my advocacy experience? In the future, perhaps in conjunction with the IBS Research and Treatment Act that IFFGD drafted, I hope there might be an registry or bank for actual tissue, blood or DNA so those of us who rarely seem to fit study criteria can still have our samples available for researchers. Several acquaintances of mine with much rarer conditions were easily able to find such for their needs. Since it's increasingly clear that there *are* physiological abnormalities, IMHO, IBSers should have one. As an IBSer who in less than 2 years has already been there, done that with almost the entire gamut of currently known conventional and complementary interventions with partial but not really adequate relief, I support funding for research. Given the prevalence of IBS, once the research and treatment options are further along, I would hope that all of us have easy access to state of the art functional GI centers like UNC and UCLA wherever we might live.I'm well aware that a lot of this is very long term, but, in my experience, progress like this is built from much smaller actions that are readily achievable by individuals if they're done by many people-- not necessarily the same ones all the time, but on a consistent basis, not just when there's a massive crisis as with Lotronex and Zelnorm.I have posted *many* specific suggestions in the past, on concrete actions, most of which I have done myself. Others have too. When I can find the links to the specific threads, I will gladly post them again here. If there are other people on this site who are doing other interesting things to encourage awareness, advocacy, fundraising, etc. I'd like to hear about it so as a community we can encourage each other in these efforts, just as we do with all the treatment stuff. In my experience, any community can't get others interested in its cause until the constituency itself gets behind it publicly and en masse. Thanks for reading.
 

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Discussion Starter · #4 ·
This is the thread I started in July titled, "Constructively changing the system." I have a very concrete list of several suggestions there.http://www.ibsgroup.org/forums/index.php?s...mp;#entry752322I can't easily cut and paste links to multiple threads in multiple forums, but I also have another specific awareness suggestion in the GI Books forum thread on Tim Phelan's _Romance, Riches and Restrooms_ (topic 98185, post 15) I have done this myself with Tim's book, though if somebody prefers another book, or eveh has used IBS books whose suggestions didn't work well but might help someone else, that might work. In general, I have found the people around me, including colleagues, to be quite eager to help out in this way.I discuss no-cost ways to raise funds for IFFGD, AGMD or any other US or Canadian not for profit in the Websites or Services forum in "Support IBS causes by searching/shopping the Internet." (Topic 63612) and posted to ask people to encourage people in their lives to click for awareness andlor fundraising when one of those sites featured IFFGD's logo recently. (News Forum, Topic 110903)As I currently work in an area with hundreds if not thousands of people passing through every day, and frequent some other high-traffic places, I'm considering placing some simple IBS awareness flyers or cards in free pamphlet displays, leaving them in the many restrooms and asking an opposite sex coworker to take care of the other ones, putting similar flyers or cards in books that I ask others to pass along as above. These are small actions of course, but ones that again, I hope others in this community will consider using-- or other creative ideas and will post about it when they do to help foster an advocacy minded culture on this BB and/or the IBS community at large. I cannot believe that I am seemingly one of very few IBSers interested in doing things like this and that I am not reinventing the wheel here. Openness and advocacy are in all our interests in the long run. If anybody would rather discuss this by PM, I welcome that as well. Thanks for reading.
 
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