Paying It Forward for Irritable Bowel Syndrome (IBS)
With various economic and political changes in some of the countries that frequent this blog and our main website, many citizens have started to wonder about the mid-range and long-term future for government and public support for their various interests and causes. This has included concern from some scientific researchers in various fields about their ability to continue their work. While the future remains to be seen, for many people from diverse parts of society, this has sparked increases in private giving to a wide variety of causes. This is a positive development and something IBS Impact hopes more people with IBS and family members will consider for our community the next time they think or say, “Why doesn’t anybody research better treatments… do more awareness… provide services … recognize this need or that need?”
Well, the answer is that some organizations and many researchers and other professionals in the functional GI disorders community indeed do many of those things and have been doing them for quite a while. That their consistent efforts and progress are not generally publicized as well as resources and breakthroughs for other common health conditions, and these organizations and individuals are not household names all over the world. or even in their own countries, recognizable instantly to any IBS-affected family, let alone the general public, is definitely a problem. Recognition of the IBS community’s existing resources and accumulated medical evidence is something that other sites and groups, both grassroots IBSer-led like IBS Impact and others, and established professionals, have endeavored to address. Just as with IBS itself, advocacy, awareness, education and research are slow. They are unpredictable. They take effort, perseverance, some degree of luck, and more than a little courage when the going gets rough, and many other things. The still-unmet needs that one could theoretically expand to meet appear endless. But one of the most practical needs for any of this to happen is money. Staff members need to be paid, offices and labs need to be kept open with utilities, phones, computer hardware, software, Internet service, websites, other equipment and supplies, printing and postage for print publications and brochures, travel and fees for conferences and other public speaking or advocacy opportunities, to name just some of the typical organizational or research expenses.
Irritable bowel syndrome is extremely common. It is found in almost all countries on every continent of the globe, in every age group from young children to senior adults, in all genders, ethnic groups, socioeconomic groups, religious or political affiliations or lack thereof. 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. Many people with IBS who do talk about it find that some people they interact with 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 hypothetical wealthy people to come along spontaneously, hand over inexhaustible sums for IBS, and bring millions of the general public to our side to fight our own battles 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 eight 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.
Almost six 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. Three years after that, on August 25, 2014, then-current events prompted this blog to revisit and expand upon the topic. Some grassroots crowdfunding efforts like Facebook Causes and the IBSGroup.org donation fund are no longer in existence. But most established not-for-profit organizations and research centers do remain, and the general issues raised in the posts years ago are still the same and will remain that way for years to come.
IBS Impact itself is neither a business nor charity. From inception, expenses of keeping the main website running and randomly- generated ads off this free blog have been donated by the IBS Impact founder and a succession of webmasters, all people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and maintain our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in several countries from which we receive many hits, 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 and Amazon Smile 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.
IBS Impact challenges people with IBS and family members– if an IBS organization or medical professional associated with an research entity has ever been helpful to you, or even if you hope they may be able to in the future, think about giving back. Many of us have not have unalloyed positive experiences over the years, but keep the faith. If even one site, one group, one individual in the IBS community has given you hope, information, comfort, direction, remember this. Then find an IBS or GI organization or research center that speaks to your interest, hope, or memory, and consider literally paying it forward to whatever extent you can to improve the future for all of us.