Can’t We All Just Get Along? Friends And Frenemies In The IBD And Ostomy Community

As ostomates and IBD sufferers, we very often discuss how our ‘normal’ friends don’t understand our condition. We lament how they don’t get why we sometimes have to cancel plans last minute. How they come out with clueless gems, like “I know how you feel …. I ate some dodgy chicken the other day and it gave me a really bad tummy”.

On the flipside, you would expect bonds to be especially close between fellow sufferers. I mean, who else can empathize with what we’ve been through in the same way? We should all be kindred spirits. So it comes as a bit of a shock to find so many ‘frenemies’ amongst the IBD/ostomy community.

‘Frenemy’ (less commonly spelled ‘frienemy’) is an oxymoron and a portmanteau of "friend" and "enemy" that can refer to either an enemy pretending to be a friend or someone who really is a friend but also a rival.

*Source Wikipedia

How do friends turn into frenemies in the IBD community?

I think at some point we’ve all accidentally said to someone in our community something along the lines of “…yeah, I was hospitalized too. But I was so much worse than you are now.”

When you’re the recipient of these words, sitting in bed feeling ill and fed up, that well-intended comment can hurt. It can feel like you’re being told to man up, rather than being given reassurance – “you can get through this, I did” – as was probably intended.

That said, in my experience, sometimes on healthcare social media and online forums there can be a weird element of rivalry about who is the sickest. It probably does simply arise from large groups of people feeling so ill, often with a lot of time on their hands and without the social constraints that being physically present together would impose. People can be dismissive about others’ feelings, yet very quick to be competitive about their own illness and symptoms. It is a shame and I’m sure that many do not do it intentionally.

The pitfalls of online friendships

It doesn’t help that tone and sentiment is so easily distorted or misinterpreted as it pings across the interweb. If you’re on the receiving end of advice, you need to consider this before jumping too quickly to conclusions or becoming offended.

If you’re the one imparting information, do consider your wording carefully. This is a good thing to keep in mind, regardless of whether you’re talking face to face or across the web!

Consideration is key for both parties.

Learning an important lesson – from two famous Olympic athletes!

Funnily enough, I got some great advice about how to cope with these online community situations (and frenemies in particular)…from none other than two famous Olympic athletes, Amy Williams - Bob Skeleton Champion 2010 and Mhairi Spence - Modern World Pentathlon Champion & London 2012.

I was lucky enough to attend an audience with Amy and Mhairi back in March. As professional athletes they spend a lot of their time training and living with the people they compete with. Like our IBD / ostomy community, you would expect that to make them a very close knit bunch. In reality, they said, they can go from chatting about what happened in Holby City on the Friday, to shunning each other on the Saturday when they are all vying for the same medal. They said that you can walk into a changing area at a stadium and feel utterly lonely, despite being surrounded by ‘friends’.

Amy and Mhairi both constantly got given advice, from all the others they mixed with, about their body shape, diet, recovery methods and how to stand any chance in competitions. The advice they gave was: who cares what you look like or how you achieve things if you’re achieving your own goals. Be confident in what your own small support network agree is right and normal for you. I feel this encouragement can be carried into coping with our illness and disabilities. Sometimes we need to be reminded of how well we are doing, when all else seems to be so negative.

In a nutshell

Empathy is everything.

Sometimes we all need to pause, take a breath and remember that, despite our common conditions, we are all actually very different people with very different bodies that react and recover in different ways. What works for me, won’t necessarily work for you.

That doesn’t mean we can’t be friends and be supportive to each other.