More Things To Say and Not to Say to People With IBS

February 27, 2013

Recently IBS Guide Dr. Barbara Bradley Bolen blogged on 10 insensitive  comments or close variations often heard by people with IBS from those around us, along with 5 comments that many people with IBS would appreciate as helpful. According to Dr. Bolen, this post grew out of a joint project with many of her fellow Guides who created their own lists for their respective disability or health condition of interest, several of which Dr. Bolen links to her own post.

This week, IBS Impact has chosen to draw attention to this excellent effort for several reasons. First,  these relatively brief and readable posts are ideal for spreading awareness among family members, friends, colleagues, classmates and the general public who do not have IBS or another highlighted disorder. Second, many individuals who are significantly affected by IBS tend to believe that we are the only ones whose struggles are severely misunderstood. Perhaps some of us can find solace and confidence to advocate for ourselves by realizing that those with different, higher profile medical conditions often experience similar reactions and social barriers. Third, there are surely more than 10 things people should not say and 5 things they should say to people with IBS, and this is an opportunity for both IBS Impact and readers to add more to the list.

Readers are invited to read Dr. Bolen and her colleagues’ posts directly for details, but most of Dr. Bolen’s “don’t” list can be summarized as this: Please don’t assume or imply that IBS is “all in the head,” as it is a complex but very real physical condition. Please don’t assume that there is an easy fix if the person would only eat the right things, exercise more, see the right doctor, get out of a given stressful situation, follow what you or someone else you know with IBS did, etc. Given the current state of the science, there is no cure, or even any way of predicting how any individual person will respond or not to any specific treatment intervention, none of which are universally effective. Each person is different in severity, symptoms and symptom pattern. Please don’t call attention to bathroom habits, which can be embarrassing. Many people with IBS do need a restroom frequently, unpredictably, urgently, may take a very long time in there, or all of the above, usually have to pay more attention to our digestive systems than any reasonable human being would prefer, and will do what we are able to minimize disruptions to ourselves and others, but some aspects are out of our control.

IBS Impact would add two more common reactions to the “don’t” list. Please don’t say, “It won’t kill you.” or “It’s good that it’s not [insert life-threatening condition].” Some clinicians and researchers in the field of functional gastrointestinal disorders report that some people with IBS fear colon cancer or something other than IBS. As such, educational materials on IBS often “reassure the patient” or advise other professionals to do so. Granted, if the person with IBS has been recently diagnosed, does not appear to know very much about IBS, and/or is explicitly expressing concern about a life-threatening condition, it is appropriate to educate the person on this point. However, many people with IBS have heard this from health care providers  when we were not indicating concern about a potentially fatal diagnosis, or were specifically communicating something else, such as the need for more effective pain relief. People often hear this from relatives or friends, as well. In either context, this comment can be very insensitive, effectively dismissing what,for some people, may be significant chronic symptoms and disruption as not “serious” enough. Most people with IBS, like anyone else, have had people about whom we care become ill and/or die from various life-threatening conditions, and we understand that those illnesses can also pose a range of  physical, emotional, social and/or financial difficulties for the person and loved ones. However, it’s not a productive comparison that moves toward the goal most people with IBS have of learning how to live as well as possible with IBS.

Also, please be careful with, “But you look so good!” or similar statements. While the speaker may have good intentions, if the person with IBS is experiencing severe symptoms, this comment can also be awkward at best, and dismissive at worst. IBS is mostly an invisible condition. Some people have sporadic periods in which symptoms flare up and then recede. Others live with pain, fatigue, digestive distress or incontinence, and perhaps additional non-GI symptoms most or all of the time. If the person with IBS doesn’t feel as well as he or she supposedly appears, to reply, “Yes, I’m doing well.” when it is not true is likely to make him or her uncomfortable. On the other hand, to retort truthfully, “No, actually, I’m in terrible shape.” is more candid than most people with IBS are willing to be with strangers, casual acquaintances or colleagues at all, or even close friends or relatives too often because it will make the commenter uncomfortable. Thus, many people with IBS choose not to respond or explain, but that does not necessarily mean agreement. Keep in mind that the person may be using limited energy to focus on necessary daily activities and function as well as it appears, and may not have much left to deal with casual conversation, questions or requests.

What should concerned people without IBS say and do to be considerate of those of us who live with it? Dr. Bolen’s answers have the common theme of respecting the person with IBS’s dignity and knowledge of his or her own body and needs. Here, IBS Impact would include some health professionals, who may respond to less common symptom patterns or concerns with preconceived notions of how IBS is “supposed to be.”

In family, school, work and social contexts, Dr. Bolen suggests that others do take a person with IBS’s need for a bathroom seriously and help find one as quickly as possible when needed. IBS Impact would add that if one is close enough to the person with IBS, and is able to do it discreetly, those who proactively think to point out the restrooms in an unfamiliar location beforehand are much appreciated.  Dr. Bolen also suggests asking about food preferences and respecting those needs. Not everybody with IBS is helped by diet, but it is considerate to ask, as it is about any needs or preferences for travel or social situations or in general. Reaching out with a bit of open-ended kindness and encouragement goes a long way, as many people with IBS are isolated and support systems in local communities are not readily available. Many are embarrassed to discuss IBS, and even those of us who are fairly open about IBS find that as time goes on, many people who are initially supportive become tired of the subject or run out of things to say. As Dr. Bolen writes, “How can I help?” or “I’m sad/sorry that you have to deal with this.” can show support. IBS Impact would add even, “How are you doing?” if the asker is prepared to hear an honest answer. Many people with IBS will appreciate genuine interest and compassion, which sometimes appears to be offered more readily to those dealing with other types of medical conditions. It would be easier for some people to be open about IBS if they feel confident of helpful and non-judgmental receptions.

IBS Impact encourages readers to comment with other things they wish others would say or not say or do in regard to IBS. For those who are interested in further articles geared toward family and friends, please see the dedicated family and friends section on the main IBS Impact site.

Online Study: Eating Behaviors, IBS, Thoughts, Relationships and Distress, the University of Liverpool

February 18, 2013

This study is being conducted by Gemma Culverwell,  a trainee clinical psychologist under supervision by the University of Liverpool and the Salford Royal Foundation Trust.

This anonymous online survey  is open to men and women ages 18 and over. You need not have an official diagnosis of IBS or an eating disorder to participate According to the study description, the questionnaire should take approximately 15-20 minutes to complete. Please address any questions or concerns about the survey directly to Gemma Culverwell or her supervisors at the contact information listed on the survey page linked below.

IBS Impact thanks its various U.K. contacts for alerting us to this opportunity.

New Updates to IBS for February 2013

February 10, 2013

Updates to some pages of the IBS Impact main website have been completed recently.  These changes include the most current information and links on the progress of advocacy for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, known as HR 2239 in the 112th U.S. Congress, which is expected to be reintroduced in the current 113th Congress under a different number later this year.

There have also been new resources added and defunct ones removed on the links page. Various blog content that has proved  to be of particularly high, ongoing interest, including advocacy for the Restroom Access Act (Ally’s Law) in several U.S. states, the specific concerns of military veterans and service members with IBS, and recent changes to the American Psychiatric Association’s DSM-5 criteria that may negatively affect some people with IBS and/or other chronic illnesses, have now been linked on the main site for greater visibility.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and public awareness of IBS, and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact, as an entity, is not directly affiliated with any other organization, site or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations and clinical and research entitities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. Contact links for the IBS Impact founder and webmaster can be found on the home page of the main site, or comments can be left on this blog.  Thank you to all of our readers and followers for your interest and participation.

The IBS Cartoonist

February 4, 2013

Although IBS Impact was founded and is administered by people with IBS and this blog is written by a person with IBS for people with IBS and those who support us, it is intentionally different from many existing personal blogs about IBS , in that it doesn’t focus on a single individual’s own experiences, on management strategies or on personal venting or emotional support per se. That type of blog or forum has its place in the irritable bowel syndrome community, but IBS Impact has chosen to concentrate on awareness and referral to scientifically reputable resources, concrete and immediately useful clinical trial and advocacy opportunities, and discussions of  the broader medical and social challenges and philosophical issues encountered by many of us who live with moderate or severe IBS. As a result, this blog is consciously serious and hopes to attract like-minded readers interested in the kind of news and information we offer.

On the other hand, there is a relatively new blog out there, begun in the past several months, that is unique in an entirely opposite way.  A blogger who is known online by the pseudonym Chronically Me periodically posts hand drawn cartoons about the experience of having IBS. Sometimes we do need to laugh about something that can otherwise be disruptive, painful, depressing or embarrassing, and IBS Impact encourages those who are trying to raise awareness in a way that is non-traditional and therefore may attract attention. A new cartoon was just posted about a week and a half ago. Feel free to check it out, for a few moments of tasteful inside humor about IBS from one of our own.