How to tell someone you have a stoma is one of the most common questions I’ve heard over the years. Whether you’re telling a friend, family member, someone you’re dating or supporting a child through the same conversation, there is no one-size-fits-all approach.
Telling someone about your stoma is deeply personal. If you’re sitting on the fence, remember that you don’t owe everyone an explanation. There is no timeline, and you should never feel pressured to share something you’re not comfortable talking about. Here are a few things I’ve learnt along the way...
When is the right time to tell someone I’m dating?
Dating with a stoma can be nerve-racking! Putting yourself out there already makes you feel vulnerable, and adding a stoma into the mix can feel impossible. But remember, dating can be rubbish whoever you are, for all sorts of reasons!
If someone decides your stoma isn’t for them, well, thank your stoma for sorting the frogs from the princes! When I met my now-fiancé at work, one of the first things I did after planning our first date was send him my Instagram handle (who is she?!).
This wasn’t because I wanted another follower, but because I used my platform for advocacy, and everything he needed to know was there. It saved me having that potentially awkward conversation face to face. His response was lovely, followed by some curious questions, and a baby and an engagement ring! A stoma doesn’t stop you finding love, and you deserve it just as much as the next person.
When should my child tell their friends?
For younger children, it can happen quite organically. If your children are anything like mine, they might proudly show their bag off without a second thought when they are at nursery and lower school age. For children having surgery when they’re older, it can be more difficult.
Giving them time and space to decide who they want to tell is so important. Perhaps they’d prefer to tell a close friend outside of school or have a parent help explain. It might help to speak to their friends’ parents first, or arrange for your child to tell their friends outside of school, away from the attention of the playground.
At school, certain staff will need to understand your child’s medical needs to support them safely. It is important to reassure your child about why certain adults need to know, and that their information will be treated sensitively. I feel strongly that children should also have a trusted adult they can talk to about the emotional side of living with a stoma, not just the practicalities. Some children may need more support than others, and that’s okay.
When should I tell my employer?
If you’re having planned surgery, you’ll usually need to discuss time off and recovery with your employer. This is also a good opportunity to talk about any support you might need when returning to work.
In the UK, if your circumstances meet the legal definition of disability, you may be entitled to reasonable adjustments under the Equality Act 2010. These could include suitable toilet facilities, somewhere to keep supplies, or flexibility when managing stoma-related problems.
I’d always suggest putting agreed arrangements in writing. You don’t need to tell all your colleagues, but sharing relevant information with your manager or HR team can help you get the support you need.
One fellow ostomate shared that he created a presentation for his team at work, explaining the whys and hows of how he came to have a stoma. Such a creative way to approach the conversation if you feel confident and comfortable doing so!
Be prepared for questions
Someone hearing about a stoma for the first time may naturally have questions. If they love and care about you, they may simply want to understand what life is like for you. Some will listen and give you space, while others might have a hundred questions! Remember, you don’t have to answer anything you’re uncomfortable with.
Telling someone about your stoma doesn’t have to be a big announcement. It might be a quiet conversation over a cup of tea, a message or even an Instagram handle like mine. Whatever feels right for you is what matters. Take your time, trust yourself and remember that your stoma is just one part of who you are. You get to decide how much of your story you share with the world.
