A chronic condition, such as inflammatory bowel disease (IBD), can affect a person in many ways. Some are physical, such as over-all health, physical growth, and daily mobility. Some are psychological and social, such as increased stress and isolation. Some are economic, such as reduced opportunities for education or employment, which in turn can mean reduced financial resources and living standard.

As IBD patients, we fare better when we take very good care of our general health, thus we can look well on the outside, even when we are ill on the inside. Friends and co-workers only see us when we are well enough to get out, so they might not realize how sick we are when we are too ill to work, socialize, and carry on with our day-to-day pursuits.

The fact that we sometimes have to limit our activities can cost us dearly, as we find it hard to keep up social relationships. Additionally, our disease concerns bodily functions that some people are uncomfortable discussing or even hearing about. All of this can result in us becoming progressively more isolated. It’s a downward spiral.

In addition, IBD is a chronic disease, typically with irregular flare-ups and remissions. We all seek to discover ‘why’ this happens, but can rarely point to specific causes for either a single ‘bad day’ or a major flare-up. This can create misunderstandings and increase our isolation further.

Even family members, who do see us on our ‘bad days’, can’t know all the effects of our disease unless we tell them. They are not mind readers. Sometimes family members are supportive initially, after diagnosis, but then don’t understand why we aren’t getting better. How many of us have heard the question, “You are taking your medicine, aren’t you?”

Perhaps, analogous to ‘donor fatigue’, we can find our family and friends exhibiting ‘supporter fatigue’. Even worse, occasionally some individuals shy away from those whom aren’t at optimal health.

So what can we do about this? The cure for isolation is connection. It is important for us to develop and nourish the connections we have with our family, friends, associates such as co-workers or teachers, our healthcare professionals (such as doctors, pharmacists, nurses, and dietitians), counsellors, and religious or spiritual advisers.

In turn, the key to nourishing connections is communication. We need to be very clear about all the ways our disease is affecting us. We need to patiently explain why we can’t eat everything that’s on the feast table, why we maybe can’t join them for restaurant dining right now, or why we have to pass on an activity because we are just too sick today. We need to explain our limitations without becoming whiny or dependent.

Sometimes this is easier said than done. Sometimes we are too sick to make even a minor effort. Therefore, it is important to do our educating when we are feeling well! Written resources such as pamphlets can be a big help. Passing this Inside Tract™ article to a family member or friend might make a big difference. We also encourage family and friends to attend disease-specific public lectures with us so they can hear about our condition directly from a healthcare professional. This is where the BadGut™ Lectures and Inside Tract™ Conferences offered by CSIR can help. Above all, the same resource we use to help ourselves, the support group, can be an effective means of educating others.

For those not familiar with a support group, here are some benefits that lead us to believe that it should be part of the plan to manage any chronic disease.

First, a support group supports its members; that seems obvious, but what does it mean? It starts with listening – listening in a non-judgemental way to other people’s experiences. One of the confounding things about IBD is that it manifests very differently from person to person. While there are common threads, there are no ‘one size fits all’ approaches, solutions, or treatments. No one is required to speak at a meeting, but everyone is encouraged to speak, or ask questions, and anyone (not just people with IBD) can come and participate. As you listen, you discover that you are not alone, and expressing this connection, “I know what you mean!” arises naturally in the group.

Second, and not so obviously, a support group is a means of sharing information. We believe that becoming informed and accepting responsibility for our health, leads to better outcomes.

For example, most ‘veterans’ agree that although there are certainly factors that increase or decrease the number and severity of the bad days, there remains a stubborn element of randomness in the course of the disease. Unfortunately, when we are very sick, we may forget that just a little while ago we were OK, and, probably will be OK again in a few days. If you attend a support group, then you are more likely to remember this, since there are usually some people who are doing poorly, and some who are doing OK at any given time.

One might think that we could rely on our physicians for all the information we need to manage our disease. Sadly, this is not always the case, especially on ‘soft’ issues such as diet, stress management, and how to cope with daily living. This also applies to issues such as how to take prescribed drugs, especially when we are first diagnosed (and first prescribed therapies); things just don’t always stick in our mind – after all, it’s a very stressful time. For example, one member of the Vancouver IBD support group decided to take half doses of an enteric-coated drug. It was at a support group meeting that he learned that by cutting the pill in half, he was essentially throwing the drug away, as the medicine was not getting to the targeted area of the bowel.

While information shared at a support group meeting cannot replace consultation with physicians and pharmacists, we typically share a much wider range of information, and it is all coming from another person who is in the same spot as we are. This is the real world – there is nothing theoretical or academic here!

Therefore, to summarize, one of the most debilitating effects of IBD is increasing isolation. The way to defeat isolation is communicating our situation to as many people as can usefully deal with the information. In addition to conversation and written materials; attending lectures, conferences, and a support group – and inviting family and friends to attend – can all help us deal with any tendency to isolation that may arise.

Vancouver IBD Support Group
First published in the Inside Tract® newsletter issue 159 – January/February 2007