I think most of us have been in the position where it has affected relations because of the reluctance to discuss it or simply misread as anti-social behaviour which is far worse!
We all see our own homes as the havens they are in which we can be at ease with changing our bags, dealing with leakages, the noises and the discomfort which leaves you wanting to lay in some peculiar positions from the comfort of our own sofa.
So where does that leave us when we do something that everyone does – visit precious family and friends?
It can leave us stressed up to the eyeballs as we negotiate family relations and how we can use their bathroom, staying in their spare bed or sat on their sofa when our stomas are at their noisiest. I think Mark is well and truly used to me asking him to do a ‘recce’ upon arrival to see whereabouts their wheelie bin is and can I negotiate this myself in wheels or do I need his more stealth like approach, typing this it sounds like a ‘Carry on’ film but I think we would all agree that life with our stomas leaves us resourceful and versatile!
It’s good that we have platforms where we can all share our stories - and our nightmares! That way we pick up tips like the ingenious nappy bin which helps lock in odours between changes and the plastic sheet to cover the mattress on the bed you’ve been lent for the weekend but more importantly to talk about it, share our laughs, our fears, our experiences and our robust personalities shine through.
The need to talk and share will always out trump (excuse the pun!) the anxieties of when things go wrong because we all need each other at different times in our lives and no one knows if they’ll be in that exact situation in the future where they wish a family member or a friend would have subtly given them the nod, the green light, to share their concerns and in doing so, dispel them.
After all, it is Taboo that causes the problems here, it limits our experiences and it limits our enjoyment and it’s about time we gave it its marching orders!
That’s why I’ve asked the Vyne team whether we could work on a little card or an email, or both! Which ostomates can send to their family & friends in a bid to approach the topic in a way that allows for that initial awkwardness, luckily, we’ve all got family and friends who will already be one step ahead and be happy to ask you what you need but for many Taboo is still hanging around in the background making it awkward for them too.
If we all just keep on talking we wouldn’t read such horror stories in the media where people would rather lose their life than live our ‘normal’ and even for a veteran ostomate such as myself the impact of that is still so huge on your own self-esteem. I would like to live in a society where I don’t have to overhear people discussing my life as their ‘worst case scenario’ and that will only change if we keep talking about our ‘normal’ and that must start with our family and our friends because, after all, they already love us – what better place to start?
