Navigating talking about your stoma | by Rachel
Having stoma surgery is alot to physically and mentally get your head around. The journey you go through in being able to return to the activities your daily life requires of you takes its toll. There is suddenly new equipment to take with you, things to allow for, and a new bodily function to contend with. On top of all this, you may start being asked questions from friends, family or colleagues. Here are my top tips on how to navigate this:
Know your boundaries
When you do start to say what happened, it is useful to know what exactly you are comfortable in sharing and to whom. Know your boundaries and stick to what makes you happy. If someone asks questions you are not happy to answer, simply say that you are not comfortable to do so. They should respect your wishes. If they don’t, they are not the people for you. Allow family, friends and colleagues space to talk, but only on your terms should it be that you share such personal information.
Handling awkward moments
Just because you have had stoma surgery doesn’t mean it should be assumed you are automatically happy to share it warts and all. You may find some questions asked are comfortable to answer, but others not. This is perfectly fine, and ties in with knowing your boundaries as previously discussed. Topics that people may ask may include passing wind, intimate moments, or even wanting to see the bag. A simple response of not wanting to should be respected. If people are curious about topics you don’t wish to talk about, direct them to websites with useful blogs. You could point them to social media where people show aspects of stoma life. This can answer their questions without making it personal to you.
How to start a conversation
If you are the one that would like to share and start the conversation it could be a bit daunting. The situation can dictate the approach such as a date, family member, or colleague with how much detail you want to go into. Choose an environment you can be most relaxed in. It might help to know beforehand what you would like to say. You could go through it beforehand, or write some pointers down. Give yourself time to heal, and be ready to have such conversations before you share. It may bring things up you weren’t prepared to feel, and that’s ok.
Who should you tell
Having a support network around you is very important for your recovery. Hopefully you have trusted family members, friends, or loved ones who will know. If there are some that don’t know but you want them too, you could ask those that do to give them the basics until you feel ready for a proper conversation. When returning to work, depending on how your health is overall, it may benefit you to let your employer know in case there are reasonable adjustments required. You do not have to tell your employer about your stoma, only if you want to. For me, I always have as it means having some appointments to attend, and needing the use of suitable toilet facilities should I need to change my bag in the workplace.
In conclusion
How much you share is completely up to you, you don’t owe anyone an explanation or details. If you choose to share, that is your choice including how much detail you go into and when following surgery you do. There are many ostomates out there that choose never to share with a partner or loved one, and live their life with their stoma as a secret. Generationally, it was not typical to share such intimate details, and a stoma was certainly not shared. Before the days of social media it was not seen in the media, or openly discussed very often. One thing we can be thankful of in the development of technology and openness in society, is that there is representation, and opportunities (if you wish) to share.
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