Dealing with stoma stigma
Dealing with stoma stigma
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Stigma defined
Stigma defined
According to the Merriam-Webster dictionary, stigma is defined as a set of negative, and unfair, beliefs that a society or a group of people have about a thing or group of people.
Examples of stigma include verbalised negativity (and derogatory jokes) around mental illness, religion, gender, sexual orientation, physical disabilities and ostomates.
Stoma stigma
Stoma stigma
Stoma stigma is rooted in cultural taboos, misinformation and ignorance, downright rudeness and spite...
Bowel and bladder functions are taboo topics in many societies:
Talking about poo, pee, or associated medical devices attached to the body is often seen as 'gross' , 'smelly' and 'inappropriate'.Lack of visibility:
Many people have never knowingly met someone with a stoma. Globally, there are some 14 million ostomates - chances are you know someone with a stoma, but they will not have told you (why should they?).Misconceptions:
Some believe stomas are smelly, unhygienic, limit physical activity, and make people less attractive and less capable.
1: It starts with YOU
1: It starts with YOU
Acknowledge that your stoma is a medical solution that has kept you alive.
Dealing with stoma stigma starts with you. Learning about the medical reasons behind your stoma, as well as connecting with others in similar circumstances, can help foster a sense of community and reassurance. It is important to remember that you are not alone in facing these challenges, and there is much support available to help you address negativity. The crucial first step in tackling stigma is to focus on your own mindset, as this forms the foundation for changing attitudes for the better.
2: YOU define and control the conversation
2: YOU define and control the conversation
It's YOUR stoma, so you select what you want to say (share) about it. You are not obliged to say anything.
Be like Shrek and create layers to your story. Start with a basic layer and add more layers that you can peel away depending on who you engage with.
Layer 1 (basic story) for work colleagues and casual acquaintances:
"Yes I have a stoma, its no big deal. Lots of people have one!"Layer 2 for friends and extended family:
“I had / have [cancer | IBS | Crohn's | etc.] which resulted in having a stoma. I no longer do poo / wee down the loo. My stoma collects poo / wee into a bag. It is discreet and manageable.”Layer 3 for close family and partners:
"I need you to understand my changing toilet habits and what to do if I have an emergency (e.g. leaks, etc.)"Layer 4 for sexual intimacy:
This is probably the most difficult scenario to deal with. There are different aspects to tackle depending on whether the relationship is with a long-term partner, or a new partner. Regardless, honesty is the best-policy and the only suggestion offered here is to talk about it in advance to avoid unwanted surprises.
By adopting layers, your story remains consistent and you avoid the issue of saying one-thing to someone and another-thing to someone else. It helps you develop confidence and remain in control of your stoma story.
3: Deal with the ignorant and rude
3: Deal with the ignorant and rude
Unfortunately, you will encounter people who say ignorant, hurtful or rude things. You have choices here:
You can (maybe should) ignore them - don't waste time and effort on rude people. Most ostomates end wishing they had said "this or that" in hindsight - learn from this and be better prepared next time. Don't waste time and effort looking backward.
You can (maybe should) educate them. Stuff to help educate:
More than 13 and half million people on the planet have a stoma. You probably know people who have a stoma but they haven't told you.
Here's a great list of famous ostomates. The list includes athletes, royalty and much-loved actors.
Approximately 100,000 people in America undergo life-saving ostomy surgery annually.
Over 100,000 people in the UK live with a stoma.
If you want to understand just how common ostomates are, google it... (other search engines are available).
4: When life serves you lemons
4: When life serves you lemons
Humour can often be used to help navigate difficult situations.
Having a stoma means:
you will never, ever, argue about who left those skid marks down the pan...
you will never be caught-short when out and about and find the loos are broken / closed toilets...
you can eat 'hot' spiced food and not have to worry about morning after ring-burn...
you don't need to join the hundreds of others rushing to the loo at half-time...
5: Join support groups
5: Join support groups
There are many support groups out there. They fall into 3 main categories:
Informal self-help groups (Facebook and other social media groups).
Formal support organisations offered by healthcare providers and registered charities (e.g. the NHS, McMillan, etc).
Commercial companies that sell ostomy products. They often have links to support resources.
Depending on your location, use a web search engine for support groups in your location. You may be amazed at how many are out there that offer great support, tips and advice.
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