When you have a stoma, sometimes you are hesitant to tell other people about your stoma because not everyone sees it as a positive and thinks it’s something that you should get rid of. A stoma is not something that all disabled people are going to want or need, but it is necessary for some people, and can be difficult to find support because not everyone understands why someone would want one. I have two stomas connected to my bladder and bowel that help me go to the bathroom independently, which has completely changed my life. I am always hesitant to talk to my friends about my stoma because the moment people hear you have one, they pity you and start giving you all kinds of unsolicited health advice. Non-disabled people are constantly giving disabled people unsolicited health advice because people sometimes think that if we ate healthier and exercised more, we would cure ourselves. It can be hard to accept a stoma, and it only makes it harder when people around you aren’t supportive of it. I wrote a post a while ago about things you should never say to someone with a stoma, so now I am going to talk about what you should say.
I am not familiar with that, and do you mind telling me more?- Some disabled people are not going to feel comfortable talking about their stoma. If a disabled person is not comfortable talking about their stoma, you should respect that because you are not entitled to a disabled person’s medical history. As a disabled person, I don’t mind talking about my stoma with people I know because it is a huge part of my life, and talking about it helps normalize stomas. If someone is curious about your stoma, you don’t have to give them personal details about your health, but explaining what it is can help people who don’t have one understand what it is and how it helps you. I think that sometimes people aren’t very supportive of a stoma because they aren’t familiar with it, and if they truly understood the benefits of it, they might be more supportive.
A stoma is not a fashion statement- Some disabled people who may benefit from a stoma may not get one because not everyone is going to want one, and that is okay. Disabled people sometimes struggle to accept their stoma because people sometimes forget about how much it improves their life and get so caught up with the looks of it. It makes things even worse when non-disabled people are not supportive of it and tell you to get rid of it. If a disabled person who had the same type of stoma as me were struggling with acceptance, I would remind them how much independence they would gain by getting one, because sometimes people need that reminder. A stoma is not the prettiest thing you are ever going to see, but you get one to make your life easier and aren’t making a fashion statement.
I will support your decision to get or not get a stoma- A stoma can make it easier for some people with Spina Bifida to go to the bathroom, but not everyone is going to want one. Non-disabled people are either very supportive and think everyone who benefits should have a stoma or are completely against them. I am always willing to tell people about my stoma because it’s important to have the knowledge so you can decide if it’s right for you. A stoma has completely changed my life, but never will you hear me shame someone for not wanting one because, unless it’s a matter of life or death, no one should ever be forced to get one. One of the most supportive things you can say to someone with a stoma is that you support whatever decision they make.
It’s okay if you are struggling with acceptance- Doctors often will tell you all the good things about having a stoma, but what they don’t tell you is how much harder body acceptance is. My stoma’s are just two little red holes on my lower abdomen, and it can be difficult to accept your stoma because it’s not pretty, and seeing those holes doesn’t make you feel beautiful. Disabled people are often expected to love their disabled bodies, and are constantly told that we should embrace our differences, but that is easier said than done. Some days living with a stoma is really hard, and one of the most supportive things you can say to someone is that it’s okay if you’re struggling with acceptance. It takes time to accept your stoma, and there is nothing wrong with you if it is taking you a little bit longer to accept your stoma than it did for your friend. Everyone accepts their disability at different rates, and I have been disabled my whole life, and it still took me years.
I am so glad that it helps you– When you have a stoma, often people will tell you that it’s not normal and that you should get rid of it. A stoma is not something that everyone is going to want or need, but it is necessary for some people. People are always telling me that I should get rid of my stoma, but not very many people tell me that they are glad that I have something that helps me. I think we need to start telling disabled people that they should do whatever it takes to make their life easier instead of shaming all the medical decisions someone is making for themself.
A stoma can change your life, but it can be hard to accept because a lot of people see it as something that isn’t “normal that you should get rid of. I have had a stoma for most of my life, and although I could manage bladder and bowel problems without one, it would be so much more difficult. If I were to get rid of either one of my stomas, it wouldn’t all of a sudden cure my disability, and I would still have to find ways to go to the bathroom. People who have a stoma need more support than someone without a stoma because living with a stoma is hard sometimes. You don’t have to understand why I have a stoma, but you should support my decision because no one knows what is best for my health better than I do. I am only sharing my experience with living with a stoma, but I don’t speak for all disabled people because not everyone has the same type of stoma as me. What would you say to someone with a stoma? If you liked this post, please leave a comment below and share it with your friends.
If you liked this post, please be sure to check out my previous post on what not to say to someone with a stoma.
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