We now have support groups (locally or online) to help us through any with any number of life’s challenges. This is particularly true for those with serious (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.
And yet many IBDers (and other people with chronic illnesses) do not join a support group or online forum. They may register with an Association, having been given the forms by their doctor, but they do not join and engage with the community. Last week I gave you the first 3 reasons not to join a support group (and why you should join anyway).
Here are the final 4 reasons…
Reason 4: I have only a mild case of IBD – the other people at the support group (or on the online forum) will probably be more sick than me and have a real reason to be there.
To begin, the assessment of the ‘mildness’ of your disease is very subjective. And the disease activity at any particular time is no indication of the future course of the disease. James Lang in Learning Sickness says that:
my initial inability to come to terms with my disease, and accept its presence in my life, was seriously exacerbated by … [the doctor's] estimation that my condition would remain a mild one…
In fact, Lang became very ill, and it was this serious flare which lead him to a deeper understanding of his disease.
You are not in competition with the other people at the support group, and they are not there to judge you. Your experience with the disease may be limited, you may be newly diagnosed, but go and learn from others and share your own experience – the people you meet will appreciate your honesty.
Reason 5: I am embarrassed by my illness. I don’t want to think about it too much or have to tell people that I am going to a support group.
Yes it is bowel disease and its vocabulary includes words like colon, rectum, faeces etc. These are words not usually spoken in ‘polite’ company. But this is the reality of your disease and you have no reason to be embarrassed. You set the tone for how people respond to you – not the other way around. Have a brief description of IBD ready, using the words you are comfortable with, so you can respond in a relaxed manner when people ask about your health. Inject some lightheartedness if you want to. Just because you are being honest doesn’t mean you have to be graphic – if in doubt err on the side of brevity.
Go to a support group, check out an online forum, you will find plenty of people with stories which are much more *embarrassing* than yours!
Reason 6: I am a strong person and can handle my own problems. I don’t need a support group.
You certainly are a strong person and can handle your own problems. You’ll probably make some mistakes along the way, we all do. But you don’t need a support group to give you the answers – they won’t have all the answers anyway, no-one does.
But why not cut yourself some slack – be as generous with yourself as you would be with others. If you discovered that a friend had a chronic illness and was going through some difficult times, would you think ‘well they are a strong person I am sure they’ll be fine on their own’? Or would you think ‘They could do with some time out – I might give them a call and invite them to lunch’? You might not need the support group but maybe the support group needs you!
Reason 7: I have a good support network of friends and family – I don’t need to speak to strangers.
It’s great to have supportive friends and family but at some time or another, perhaps when you are feeling sick, or low, or when you have an uncomfortable procedure, or take your third round of pills for the day, you will feel alone in your experience. This is when it is good to know others who are having (or have had) similar experiences. This doesn’t mean your loved ones should feel excluded – perhaps your partner would like to attend a meeting with you so that they can better understand what you are going through. Or perhaps your family would like to hear about the latest news from your online IBD forum.
So what’s the bottom line?
- Join an association
- Go to meet-ups in your area
- Join online communities
- Commit to engaging with the community
Australian Crohn’s and Colitis Association (ACCA)
Australian Crohn’s and Colitis Association Qld (ACCAQ)
Crohn’s and Colitis Foundation of America (CCFA)
Crohn’s and Colitis Foundation of Canada (CCFC)
National Association for Colitis and Crohn’s Disease UK (NACC)
Find meet-ups through your local association or websites like Meetup
Try Healingwell.com and Crohn’s and UC Support Group Australia
Of course, as IBDers, we often have more excuses to stay at home than others might: we’re tired, nauseous, in pain, fatigued, running to the loo every 10 minutes. But make the effort to go to that first meet-up, and make a commitment to keep going as often as suits you, and you might be surprised by the outcome.
Online forums require a similar commitment. When you first join an online community you may feel ‘out of the loop’. But keep checking in, following conversations, and offer your thoughts when you are ready. As long as you respect the opinions of others in the group, you can’t go wrong. You will usually find that the forum regulars are quick to welcome a new poster – but don’t be offended if you don’t get a lot of responses in the beginning, it’s not personal, it’s just that there is usually a lot of new messages at any one time!