As the year draws to a close, it’s traditional for one to look back on the past and then turn attention toward the future. In the context of IBS, it’s not always easy to do that, because changes over time are often incremental or imperceptible, both in physical and/or emotional progress for an individual, and in the broader challenges of IBS research or societal awareness and advocacy. For the vast majority of those in the IBS community, people with IBS, our families and friends and professionals alike, immediate and dramatic breakthroughs are few and far between. The experience cannot be compressed neatly into the space of 365 days, 52 weeks or 12 months.
That’s why a social media post this week from InvisAbilities, a grassroots support and awareness organization of students with a range of invisible disabilities or chronic illnesses at several universities in Canada, resonated in an interesting way. InvisAbilities, which IBS Impact first wrote about here on February 7,2012, quoted Henri Nouwen, who was a Catholic priest and prolific author on spiritual topics. Nouwen was born in the Netherlands, and at various times during his lifetime also resided in the United States, France, Italy, Peru and Canada. He wrote:
When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.
Aside from the non-denominational encouragement these thoughts might provide to some readers in a range of difficult life circumstances, the ideas expressed aptly describe a situation familiar to some of us with IBS or other unpredictable, poorly understood medical conditions. The IBS community spends a lot of time lamenting or bringing awareness to some of the many things that go wrong: the misconceptions about IBS that others, including many health professionals and many of our own peers with IBS continue to hold, the insensitive things they may say, the stigma, real and perceived, some of us feel that leads many people with IBS to hide it and react with some amazement when someone else doesn’t,the need for more highly trained professionals and improved treatment options, more and better community support systems, more research funding, and better recognition of the many factors that may affect quality of life for people with IBS. All of these enormous barriers still remain. But it’s also appropriate to acknowledge the things that go right, and the individuals who help make that so.
In gathering past material from this blog that is appropriate to link in this post, it was gratifying to discover that some of it, originally written just a year or two ago, is already somewhat out of date and needs revision in the near future. Also, certainly while some of us are more fortunate than others in having the support of various family, friends, colleagues, classmates and knowledgeable, compassionate health care providers, most individuals with IBS have at least some good experiences and people among the poor ones. Chronic medical conditions that persist for months, years or even decades as IBS may, can be difficult on everyone involved. Even knowledgeable and helpful doctors and other medical professionals often run out of effective treatments to suggest. Friends, while often concerned and well meaning, especially in the initial crisis of new-onset severe IBS, run out of things to do or say when our particular medical condition never goes away. According to research by Reuben Wong, MD of the National University Health System in Singapore, who has also been associated with the University of North Carolina Center for Functional GI and Motility Disorders, even spouses and significant others of adults with IBS who accurately understand what IBS is tend to experience what the researchers call “partner burden.”
This is where Nouwen’s words become relevant. Many of us with IBS do sometimes hope for advice or cures, although some do not, and IBS Impact was founded on the belief that we are not powerless in the long view of working toward change, so perhaps Nouwen’s words may not apply literally. But in the day to day struggle of living with IBS and/or working for scientific answers, parity in societal resources with other common health conditions, and respect for IBS as a real and non-trivial condition, there are many times when there is nothing more we can do at that moment about our symptoms, logistical barriers, the reactions of others, politics, funding, bureaucracy or slow growing cultures in a research lab. It then that one often realizes who one’s real friends are, the ones who have been there and will continue to be there for the long haul when it is difficult or impossible to see the future or concrete results. The same is true on the community level also. IBS Impact began as and remains a small, grassroots effort primarily of a few people with IBS. But at various times and in various ways, some consistently, some occasionally, some from within the IBS community, some who have no connection to IBS other than an acquaintance with a member, we have been helped as an entity. So as 2013 ends shortly, thank you to all of the friends and others who support individual people with IBS so we can continue to live as productively and positively as we can, and thank you to all the friends of IBS Impact, who support our vision, even when we do not know exactly where the future leads or when or how we will get there. May 2014 be happy, healthy, prosperous and productive for all.