The other day, in the wake of a highly publicized campaign that is successfully raising a great deal of money for a particular health cause, a person with IBS said to the IBS Impact founder, “It would be nice if someone would do that for IBS.”
Well, yes, in a way, but no. There are debates in that community and the disability community at large as to if fundraising of this sort actually leads to substantively greater awareness of the medical condition in question, how much of the amount raised actually results in services and research directly benefiting the affected community rather than overhead, and if “fun” stunts actually undercut the dignity of those with the condition and trivialize their needs. There are other concerns as well, but the irritable bowel syndrome community isn’t anywhere near having high profile celebrity benefactors and viral Internet sensations and being in the position to have such discussions and differences of opinion.
Irritable bowel syndrome is very common. It is not talked about in public as much as many other conditions because for many people in our community, it is deeply embarrassing to discuss problems with related to how we excrete bodily waste and use the bathroom. Many people with IBS who do talk about it find that some people they interact to are uninterested or dismissive. While the occasional minor celebrity has come out in public as having IBS, none of them has sustained interest in publicly supporting the cause, and people who are not directly affected are not going to understand the challenges and take up the cause unless people who are affected– people with IBS and families– make their presence known and show that our cause is worthwhile. Standing around and waiting for some hypothetical wealthy person to come along spontaneously, and hand over a large sum of money for IBS is not realistic.
It is up to us, to the extent we are each financially able, to support our own needs and the organizations and research facilities in several countries that already exist to help us. This is true of any health community or other constituency, such as a university alumni association, at least in the way traditional fundraising works in the United States. Historically, support from people with IBS for our own cause has not happened much at all. It is understandable that severe IBS often brings with it greater expenses of various sources and perhaps unemployment or underemployment compared to pre-IBS productivity. But five years ago, when IBS Impact was still in the planning stages, one person with IBS stated that if every person estimated to have IBS in the United States, the United Kingdom and Australia alone donated one of his or her local unit of currency (dollar or pound) per year, we would have over one billion of them.
Over three years ago on July 22, 2011, very soon after starting this blog, we published a post entitled “Putting Our Money Where Our Mouths Are for IBS,” in which this issue was first discussed in detail, with comparisons to another related health community and explanations of the funding process in the United States. As this was a brand new blog at the time, the post got relatively little publicity, but given the recent conversation that prompted this current post, it seems like a good time to resurrect and revisit it. The grassroots Facebook Causes and the IBS Self Help and Support Group’s dedicated donation fund are all no longer in existence. But established not-for-profit organizations and research centers do remain, and the general issues raised in the post three years ago are still the same.
IBS Impact itself is neither a business nor charity. The expenses of keeping the main website running and ads off this free blog are donated by the IBS Impact founder and webmaster, both of whom are people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and establish our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in 4 countries, are linked on various pages of the IBS Impact main site, including the links and research pages. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.