The moment you’re told that you have inflammatory bowel disease (IBD) is surely a memorable one. Whilst it’s totally natural to be thinking in purely insular terms like ‘what am I going to do’ and ‘what does this mean for me?’…the reality is that you need to also think of those around you.
Coming out about your illness is a complicated, but necessary step for all IBD sufferers. There’s a lot to weigh up, so let’s look over the main considerations.
The ‘need to know’ basis
If you were to draw up a list of all your friends, family, co-workers and acquaintances – how many do you think would really need to know about your IBD? This is actually a really helpful exercise and you can make the whole process way more manageable, simply by putting all of this info down on paper
Essentially, you’re trying to decide if the intricacies of your relationship with that person are dependent on them being privy to your new diet, lifestyle, restrictions and concerns. Your partner (if you have one) and immediate family members would normally be the first to know, followed by close friends. Anyone who is going to notice a change in you – no matter how subtle – may be better off knowing the explanation. This can prevent general misunderstandings, promote awareness of your condition and let’s not forget how it can boost your confidence in the early days of your diagnosis.
But there are also those who aren’t necessarily ‘special’ to you, who it might be advisable to keep in the loop. Your boss, for instance, could benefit from understanding your condition, as you naturally spend a lot of time at work. Tiny things like your proximity to the bathroom and break allowances take on a whole new meaning once you’re diagnosed with IBD – so it’s better they are made aware of your situation, so they can do their best to accommodate it.
A good yardstick for who to tell would be to ask yourself the question: ‘Is it going to make my life, or theirs, easier if I come out to this person?’
Set your personal boundaries
When you’re coming out, it’s not just about telling that person, but also setting some privacy guidelines with them. Are you okay with them passing this information on to others? Or would you prefer to decide that for yourself? Privacy is about control and, as it’s your illness, you should really be the one who controls the level of awareness surrounding your condition.
While we’re on the subject, let’s not forget – you have nothing to be ashamed of! It’s estimated 1 in 250 Australians suffer from IBD, so you’re absolutely not alone. And as far as miseducation goes (you know, like people thinking you can’t eat anything normal, or that colostomy bags make you smell), you can always choose to correct those assumptions and steer them straight.
Who is your support network?
Coming out can also help build your support network. Support can come in many forms; with family and friends, it can be emotional support when you’re feeling down in the dumps, or simply delicious kitchen support (it feels good to have an amazing meal cooked for you that doesn’t send your stomach into backflips).
At work your support network could be a boss or HR rep; their understanding of your condition and its impact on you at work will help them help you. Or perhaps it’s a co-worker who can cover for you should you need to duck off to the bathroom. Basically, if they can help in any way, they’re probably a good candidate for your support network.
A sense of humour goes a long way
Being able to laugh at the situation can make coming out a less bothersome task altogether. Humour can at once help cut through awkwardness and misinformation. Yes, your IBD is going to impact your life and, to a lesser degree, those around you. But like anything, being able to joke about it can help alleviate some of the emotional tension you may experience in those early weeks. After all, you are updating these people about the state of your bowel, and that’s traditionally a part of the body ripe for humour!
Every time you come out will likely be a different experience. The people in your life differ in so many ways, but so long as you remember this you’ll be able to tailor your approach. At the end of the day, you’re the best judge of their character and if you feel like you didn’t handle it as gracefully as you wanted, that’s okay! This is your disease, so the onus is on them to bring the compassion and understanding; you’re simply starting the conversation.
19/09/2014 IRIS number AU-REM0326