When you are disabled and have limited mobility, sometimes it can be more difficult to go to the bathroom because you can’t exercise to the extent a non-disabled person can to prevent constipation. Incontinence is something that many people with Spina Bifida struggle with because often your bowels are impacted and you can’t go to the bathroom as easily. I have struggled with bladder and bowel incontinence since the day I was born, and I manage it to the best of my ability because there is no surgery that can fix it. It can be hard to live with incontinence, and those who struggle with constipation need more support than someone who doesn’t, because bowel accidents are embarrassing when you are in your thirties. People sometimes lack understanding and make fun of medical conditions such as IBS because they don’t understand the pain these conditions cause. Most want to support their loved ones, but sometimes will say with good intentions that can be perceived as a little insensitive and hurt someone struggling with incontinence. How can you support someone who struggles with incontinence? In this post, I am sharing a few ways you can support your loved ones who are struggling with incontinence.
Don’t make fun of medical conditions- It can be hard to live with medical conditions such as IBS because a lot of people don’t understand what that entails and think it’s something to make fun of. As a disabled person, I have struggled with bladder and bowel incontinence my whole life, and most of the time it’s well-managed, but I have had accidents and been made of. I am no longer bothered when people make fun of my bowel issues because I know most people lack understanding, but not all disabled people will be able to ignore being laughed at. If you want to support your disabled loved ones struggling with incontinence or any health issue, it is so important that you don’t make fun of medical conditions. Most people are not trying to hurt their loved ones, but if you are making fun of a condition that is similar to what I may experience, it’s going to feel like a personal attack, even if that was not your intention.
Be patient- Most of the time, my bowel incontinence is well-managed, but I can be doing everything right and still have issues because my bowel issues often are unpredictable. People sometimes roll their eyes at me and get annoyed when I have an expected bowel accident because they think that if I were a little more prepared, I could have avoided the problems, which is only sometimes true. Random bowel accidents that I was not expecting are stressful, and you are making it even more stressful when you rush me and make me feel like it’s my fault. There is a lot about my disability that I cannot control, and it’s so important that you be patient with me because sometimes my disability is going to make me late to events. Be patient with me because more stress makes things take longer, and I am probably more annoyed than you are.
Remind me it’s not my fault- When I have a bowel accident that creates a lot of work for other people, I often feel guilty and blame myself because there is always a part of me that thinks if I sat on the toilet a little longer, I could have avoided the problem altogether, which is only sometimes true. As a disabled person, I know that my bowel accidents are not always within my complete control, but sometimes I do need someone to remind me that it’s not my fault. One of the best ways you can support someone living with incontinence is to remind them that accidents sometimes happen and there is nothing to be ashamed about, because sometimes we need that reminder.
Don’t try to relate to it- Most people have experienced constipation at one time or another, but occasional constipation and chronic constipation that you can’t avoid are not the same thing. People sometimes think they need to relate to my disability to be supportive of it, and think they can because they got constipated once, but unless you have my disability, you can’t relate to it. Please stop trying to relate to my incontinence because most people can’t relate to it, and that is okay. Sometimes the most supportive thing you can do is say, “I don’t know what you are going through, but I am here to support you in the best way I can.”
Be very vague and don’t share private health information –Sometimes I have to bail on events because I have an unexpected bowel issue that prevents me from being able to go. People sometimes notice I haven’t gone to church in a few weeks and may ask why I didn’t go because they are concerned that I am not well. I never encourage people to lie, but if I am not at an event because of a bowel issue, in this instance, it’s okay to lie, and as a matter of fact, I would want you to. Bowel issues are embarrassing, and people don’t know the real reason I bailed on an event last minute, because the most important thing is that I am not there. When people pressure me to eat sugary foods, my body can’t handle that day, often I will tell them that I am diabetic, which isn’t true, but it stops people from asking questions and makes it so I don’t have to give strangers personal details about my health that is none of their business. If you want to support your loved ones with incontinence, be very vague about the details of personal health issues that they don’t need to know. Oversharing and telling people too much information often feels violating, and I won’t feel supported.
Listen to disabled people and don’t question it- I have to be more mindful of the things I eat because I struggle with incontinence, and if I eat too much of the wrong kinds of foods, it can trigger a lot of pain. People sometimes don’t understand that and will question me when I turn down a piece of cake and think I am on some kind of diet. It is frustrating that I can’t turn food down without being questioned, and I wish people would listen to me because I shouldn’t always have to explain myself. Sometimes I have no medical reason for turning down a food and just don’t want it, but often times my body can’t handle it. I wish people would listen to me and walk away after I have said no instead of making me feel guilty by telling me it’s homemade. One of the most supportive things you can do is to listen to disabled people, and if we tell you no, walk away without demanding an explanation.
Incontinence is hard to live with because a lot of people don’t understand and think it’s something we can fix by simply eating healthier and exercising more. Exercising and eating healthy can help prevent some constipation, but it does not cure me because I do these things and still have issues. Sometimes, the most supportive thing you can do for someone struggling with health issues is not to give them unsolicited health advice unless they have asked for it, because believe me when I say I have tried every remedy you think I haven’t. Incontinence is hard to live with because most people don’t understand it, but it is a little easier when you don’t draw attention to health problems and feel supported. Be mindful of how you talk about medical conditions because disabled people have feelings too, and words can hurt. How do you support your loved ones struggling with incontinence? If you liked this post, please leave a comment below and share it with your friends.
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