October is Spina Bifida Awareness Month. When you have a physical disability, such as Spina Bifida, everything in life is hard because when your spine is damaged, it often affects your entire body. People with Spina Bifida often use assistive devices and learn ways to accommodate their disabilities because you have to in order to function in an accessible world. There are a lot of things that I love about being disabled, but it’s hard to be disabled in a world designed for non-disabled people. I love the person that I have become because of my disability, and I would not be the person I am today without my disability. I don’t love every single challenge, and there are a lot of things that I have learned to cope with that are frustrating and I wish would go away. Disabled people do not have to love everything about their disability because disability acceptance does not mean you love everything about your disability, and it only means you have come to terms with it. Most of the challenges I struggle with frustrate me every day, but it’s something I have to learn to deal with because I can’t change my disability. What are the most frustrating parts of my disability? In this post, I am sharing of the most frustrating things about my disability that I wish would go away.
You can be doing everything right and still struggle to go to the bathroom- When you have Spina Bifida, it is common for your bladder and bowel function to be damaged. There are ways to manage bladder and bowel issues with Spina Bifida, but they are not cures by any means, and you can still struggle if you are doing everything right. I hate how difficult it is to go to the bathroom and wish that it were easier because not being able to go to the bathroom as easily as non-disabled people can is one of the most frustrating parts of my disability. Bowel movements can take several hours out of my day, and there is no guarantee that it’s not going to cause me a lot of pain because I can be doing everything right and still have issues. Regular bowel movements help prevent constipation most of the time, but it doesn’t matter how consistent I am with my bowel regimen; it’s almost impossible to completely avoid severe constipation because I can’t change my disability. Managing bladder and bowel issues is one of the most frustrating things about my disability, and I wish it were easier.
You can’t do whatever exercise you want- Non-disabled people can do whatever form of exercise they want and if they start an exercise program that they hate, they can easily change it. When you are disabled, you can’t always do that because not all forms of exercise are possible with disability, and sometimes you have to be realistic and base your exercise on what you are able to do. Fitness is not accessible, and I hate that I am so limited and can’t do whatever exercise I want. Sometimes I am forced to do exercises that I don’t like because it’s the only thing that my physical disability does not prevent me from being able to do well. I have been very consistent with going on long walks for cardio, and I hate every second of it, but I can’t do anything else because most cardio workouts are impossible with my disability. It is frustrated that I can’t do whatever workout I want, and I wish I could easily change my workout if I didn’t like it.
Shoes and crutch tips are so expensive- Non-disabled people who are active often will be able to buy a good pair of shoes that can last a year or more, but that has never been my reality. I will spend over one hundred dollars on a pair of shoes, and if I am walking a lot, maybe I will get three months out of it. I drag my feet more because of my physical disability, and I need an extra, extra wide shoe to accommodate my braces, and not all shoe companies have that as an option. Exercise can be an expensive hobby when you have a physical disability, and it’s frustrating that crutch tips and shoes are so expensive. I started walking with a weighted backpack, not because I wanted to follow the new trend, but because I can’t walk super-fast to improve my endurance like non-disabled people can without putting holes in my shoes and destroying my crutch tips. I am trying to improve my physical health, and it is frustrating that I have to replace my shoes and crutch tips so often. I wish they made shoes and crutch tips that last more than a few months because it’s annoying to have to replace crutch tips every two to three weeks.
It is frustrating that it is more difficult to move– Movement has always been difficult for me, but since I lost mobility after hip replacement surgery, it is even more frustrating. My mobility loss is one of the most frustrating things that I deal with every single day because it restricts me from doing activities I used to be able to do. I have had to learn different ways to do tasks because of my mobility loss, and it is frustrating that I can’t do things to the same capacity as I once could. My mobility loss sometimes feels so restrictive, and it is frustrating that my limited range of motion prevents me from getting into certain positions because it makes some tasks more difficult than they have to be
It is frustrating that I have to rely on strangers for help- Most of the time, I am around and don’t have to ask strangers to help me do tasks. I still live with my parents, but it’s not going to be that way forever, and there will come a day when my parents are too old to take care of me, and I will have to move and rely on strangers to help me do tasks. I am grateful that there are services that can help disabled people live independently, but it is a terrifying thought to have to completely rely on strangers for help you do basic tasks. It is frustrating that my physical disability makes me have to rely on strangers for help sometimes, and I wish that were not my reality. Non-disabled people sometimes will roll their eyes at me when I ask them for assistance with a task, and I wish I didn’t require help from others as much as I do. I wish that I could get my own apartment and not have to hire a bunch of people to help me do things, but that is never going to be an option for me.
When you have a physical disability, everything in life is hard, and you learn to adapt, but even though you learn ways around inaccessibility, it doesn’t mean it’s not frustrating. I get frustrated with my disability every single day, and most of the time, there is nothing I can do about it because I can’t change my disability. Disabled people get frustrated more often than non-disabled people because we struggle with things every day that a non-disabled person would not struggle with. It is okay to get frustrated with your disability because you don’t have to love every challenge and there are some things you are just stuck with that you can’t change. I am constantly struggling with things because of my disability and have learned ways to cope with my frustrations, but sometimes I will yell things I shouldn’t. It’s hard to be disabled, and sometimes your challenges get the best of you, and you do things that you shouldn’t have done. These are only some of the most frustrating things about my disability, but it is not a complete list because everything in my life is hard, and most things I wish would go away. What is the most frustrating thing about your disability? 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 how deal with frustration.
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