Beyond IBD: transcending chronic illness

We now have support groups (locally or online) to help us through any number of life’s challenges. This is particularly true for those with chronic or acute health problems. One of the major functions of IBD Associations around the world is to provide support through local groups or member networks. There are also more informal online communities of patients.

The purpose of these groups is usually one or more of the following:

• offer understanding and emotional support to patients and their families/loved ones
• provide access to the latest medical information
• share personal knowledge and experience
• use the power of the group to advocate for greater funding, research, care or awareness

My experience with support groups

And yet many IBDers and other people with chronic illnesses (that I know of) do not immediately join a support group. They may register with an Association, having been given the forms by their doctor, but they do not join and engage with the community.

I was diagnosed with Crohn’s Disease in 1998, yet it was not until 2003 that I began to make contact with other IBDers through online forums. And I did not actually meet (that is, have a face-to-face conversations with) fellow IBDers until 2006, eight years after diagnosis.

Genuinely engaging with the IBD community has:

• given me more knowledge about my disease;
• helped me feel more empowered and positive about my future; and
• introduced me to some inspiring people and new friends.

I should have done it years ago but (of course) at the time I had all sorts of perfectly reasonable reasons (excuses) not to.

And so, here are…

7 reasons not to join a support group (and why you should join anyway)

Reason 1: I have a medical problem and I will get whatever treatment I need and move on with my life. It won’t be a major part of my life and I don’t need a support group.

Unfortunately, it’s not that easy. IBD is a chronic illness, the course of the disease is unpredictable, and the symptoms are different for each patient. Even if you are one of the lucky people who have only minor flares or relapses, you will still need to manage lifelong medication and / or lifestyle changes associated with IBD.

It takes time to accept the full implications of being diagnosed with IBD. Until a cure is found the disease will be a part of your life - continuing education and communication with other IBDers will be the key to gaining a deeper understanding of (and therefore control over) your body, thoughts and emotions.

Reason 2: I don’t want to be defined by my disease - I don’t want this disease to be the centre of my life. Support groups encourage people to focus on their own problems to the exclusion of others, to wallow in self pity.

If you want to control the disease rather than the disease controlling you, then you need to take responsibility for educating yourself and building your support systems. Ignoring the disease guarantees the disease will become the centre of your life because at some point you will have a crisis (it will happen) and you will be forced to respond with all your energy and attention, just to stay afloat.

As for being selfish, surely the best thing you can do for your loved ones is look after your own physical and emotional health? The benefit is two-fold:

1. you avoid becoming a burden and drawing them into crisis situations which could have been avoided
2. you are in a better position and condition to contribute positively to their lives

It reminds me of the safety announcement they make before aeroplane flights: you have to put on your own oxygen mask before you can help others with theirs.

Reason 3: I don’t know these people - I might not like them they might not like me.

If you are nervous about attending a support group meeting for the first time, call the co-ordinator and have a chat about the usual format of the meetings and the kind of people who attend (age etc). He/she will usually be a very friendly individual and will help with any concerns you may have and you will know someone by name when you get there! Also support groups generally welcome friends and family - so take someone with you.

If you don’t like it you can leave. But chances are you will find a diverse group of people with at least one other person very similar to yourself!

Check in next week for the final 4 reasons not to join a support group…

• 7 reasons not to join a support group (Part 2)
• Learning sickness and sharing stories
• When armchair experts attack!
• 7 steps to improving day-to-day comfort
• Do you have trouble starting and maintaining good health habits?