Disabled people are constantly getting all kinds of health advice from non-disabled people because people often think we can cure ourselves by exercising and eating healthy. When people find out you have a stoma sometimes they are even more horrified because they don’t understand how a stoma improves lives and think the solution is to get rid of it. I have two stoma’s that help me manage bladder and bowel problems a little easier because those functions do not work properly. I am not ashamed of my stoma because it gives me independence, but I am always hesitant to tell strangers that I have one because it gets people fired up with unsolicited health advice that I don’t need and I don’t always have the mental capacity to deal with that. It is hard to live with a stoma because is not considered normal and often not accepted by non-disabled people. People who live with a stoma need more support than those without one but often we don’t get the support we need and people say things to us you should never say to anyone. What shouldn’t you say to people with a stoma? In this post, I am going to talk about what you should never say to someone with a stoma whether you have one or not.
If I had your disability, I’d never get one of those- A stoma can help manage bladder and bowel problems with Spina Bifida but not everyone is going to choose to have one because it’s not a requirement. When people approach me and say “If I had your disability I’d never get a stoma” it gets me mad” because something that should be positive is now being turned into a negative. Some people with my disability do not have a stoma and it is okay if you think that you’d never want to because not all disabled people do but your opinion is not as valid if you don’t have my disability. You may be surprised by the lengths you would go to make it easier to go to the bathroom and have less pain. Please stop telling disabled people that you would never a stoma because it’s not helpful and makes people who have one unnecessarily question whether they should have gotten one. If you don’t have my disability, you don’t know what you would do and I don’t want to hear your opinion on whether or not you think a stoma was a good choice until you have my disability.
A stoma is not normal, and you should totally get rid of it-.I am fully aware that a stoma is not normal and that not everyone has one, but it’s functional and you don’t get one to make a fashion statement. If I wanted to, I could probably have surgery and have my stoma reversed but that would not solve any problems because my bladder and bowel muscles still don’t work, and I would still have to find another way to go to the bathroom. I wouldn’t struggle with body confidence as much because I wouldn’t have two holes on my body but getting rid of my stoma is not a solution because not having a stoma doesn’t cure you and it will only make going to the bathroom harder. A stoma is not normal but as of right now it’s the easiest way to manage my disability and I am not going to get rid of my stoma because someone who doesn’t have my disability thinks that it’s ugly and I need to get rid of it. Before I had a stoma I struggled with painful constipation that I was not able to deal with myself and if I got rid of my stoma, I would have these same problems again. We should be encouraging people who would benefit from a stoma to get one instead of shaming people because it improves and saves lives.
Your doctor is the problem– When you have a stoma or live with a disability, the first thing people tend to do is blame your medical team for your challenges and will tell you need a second opinion. There are some instances where I think a second opinion might be appropriate, but disabled people do not always need second opinions, and a lot of the time, the second doctor will tell you the same thing the first doctor told you. If I am unhappy with my doctor’s diagnosis, I will get a second opinion, but I am not going to get a second opinion because I don’t think the first guy is smart enough to cure me. There are things I wish I had known before I had stoma surgery, but my doctor is not the problem, and they are part of the solution because my doctor is the reason I can go to the bathroom independently. The real problem isn’t my doctor, but it’s that non-disabled people can’t accept my stoma and think that I should get rid of it because it makes them more comfortable.
If you ate a little healthier you wouldn’t have as many problems- When you have a stoma, sometimes you leak a lot because your stoma may react to some foods, and people tend to think that you can easily solve this by eating healthier. Healthy eating can help me have less stoma problems, but at the end of the day, I have a stoma connected to my bowel that is just a little hole on my lower abdomen that is going to react to foods, whether I am on a restrictive diet or not. If there was a diet that allowed me to have complete control over my stoma, trust me, I would have found it, but the reality is, there is no perfect diet, and I could be eating mostly healthy foods and still occasionally have a problem because my stoma can react to any food I put in my body. Disabled people are not in complete control over the challenges of their disability, and the only way I could completely prevent a stoma problem is if I stopped eating or got rid of my stoma, which is not a solution. It is frustrating to live with a stoma, but you can’t just cure yourself by eating healthier.
Disabled people get a stoma for various reasons, and it’s not something we necessarily wanted to do, and a lot of the time, it’s your only choice for an easier life. Body confidence is harder when you have a stoma, and you are not making it any easier when you tell disabled people a stoma is not normal, but you are actually making me more self-conscious. I don’t expect people who don’t have my disability to fully understand why I chose to get a stoma, but I don’t want to hear your opinion on whether you think I am making good medical decisions for myself if you have similar challenges as I do. You don’t have to agree with all the medical decisions I make as a disabled person, but before you judge a disabled person, it is important to remember that there is no right or wrong way to manage a disability because everyone is different. Please educate yourself before shaming disabled people for having a stoma because a stoma changes lives and is not the worst thing that is ever going to happen to you. These are things that I would never say to someone with a stoma, but I don’t speak for all disabled people because there are a lot of different kinds of stoma’s and there may be some things that can be added to this list. If you liked this post, please leave a comment below and share it with your friends.
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