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When you are disabled you are constantly having to put up with ableist comments made by abled people but what tops the icing on the cake is when people say that being stuck at home because of disability is easy and that we are basically always on vacation. It makes me sad that some abled people think that my life as a disabled person is even remotely similar to what it’s like to be on vacation because if anything I have more challenges and my life is physically more difficult than abled people. If you knew anything about my disability you would know that the life of a disabled person is filled with nothing but frustrations and would be the world’s worst vacation that you would be begging to work extra hours at your job and to do anything but go on vacation. Living with a disability is a full-time job that has no breaks or pay but even with all the struggles abled people sometimes think that we have it easy because we don’t have jobs and get to be at home all the time. In this post, I am going to talk about why being stuck at home because of a disability is hard and how it’s nothing like going on your dream vacation to Hawaii.
You are always poor– Abled people sometimes get jealous of disabled people because we get “free” money from the government for being disabled and often people think that the little money we receive makes a rich. I get a monthly check but I only get around seven hundred dollars and most of that goes towards medical bills not monthly shopping sprees.Government checks can help disabled people pay for medical supplies but most people don’t get enough that you could live a luxury and many disabled people have to start side hustles like a blog or get a part-time job to barely get by. Many disabled people wish they could make more money but since I get a government check I am not allowed to have more than two-thousand dollars in my bank account and there are not a whole lot of well-off disabled people but many of us are living in poverty because we aren’t allowed to save. I still live with my parents because my blog has not made enough money to where I could comfortably live on my own and although I may be able to live on my own with a government check I’d be struggling so I am not going to do that until I have to.
You are constantly fighting insurance companies– Medical supplies can be expensive and without insurance covering some of the cost, it would be unaffordable for many disabled people. I don’t personally fight with insurance companies because I wouldn’t the first place to start but I always hear my mom fighting with insurance companies to get my supplies insurance claims are not medically necessary but totally are. Some of the medical supplies I need I can buy myself if insurance doesn’t want to cover them but most of it is hundreds of dollars and there is no way I could get them without insurance. I have run out of catheters because insurance doesn’t always send them on time and if it wasn’t for my mom going to my doctors to get more and asking my doctor how to sanitize catheters I would run out every month and not be able to pee which would be a medical emergency. Abled people sometimes have to fight with insurance companies when they get a bill wrong but when you have a disability you fight to get necessary medical supplies or life-saving surgeries that you need to survive that insurance thinks is optional.
The stress of needing another surgery- Some disabled people need a lot of surgeries to manage their conditions but some people don’t because there aren’t any surgeries that can help improve the life of a disabled person. I have had more surgeries than years I have been alive because I have the most severe form of Spina Bifida and pretty much have challenges with every single part of my body but not everyone with my disability will have the same experience. In the beginning of September, I will have another surgery because I fractured my femur which is the area right above where I had my hip replaced, and as frustrating as that is you can’t just leave it or it will get worse. When people think of bed rest sometimes all they can think it’s the greatest ever because you have an excuse to be lazy and watch Netflix all day but it’s not what you think it is. Some of my surgeries are not awful but most of them are nothing shy of horrible because you lose sleep from the pain and you would be surprised how fast you get bored if the only activity you have to do is watch television. If you think sitting in bed all day recovering from a surgery is like a dream come true because you get to watch tv all day I’ll gladly let you have all of my surgeries and you will see it’s not what it’s cracked up to be. I will gladly sacrifice a year of Netflix for the ability to sit up and move without pain!
I am dealing with constant stoma issues– I cannot go to the bathroom like abled people can because my bladder and bowel bowels do not work properly and I rely on medical equipment to help me go which works wonderfully most of the time but it’s not perfect. If I am not letting my bladder get overly full I don’t usually have a whole lot of problems empyting my bladder but bowel movements are a whole new story because even if you are doing everything right you can still run into constipation problems. I don’t what you all think I am doing during the day but a majority of my day consists of running to the bathroom and dealing with a stoma issue wondering if I am my diet is good enough to avoid constant bathroom trips. I do my bowel regimen regularly but because those muscles do not work properly I still get constipated more often than I would like and there are days when I can’t go to the bathroom and if you have no idea what that feels like consider yourself lucky because it’s possibly the worst part of my disability. It’s even more stressful on vacation because often I don’t make the same nutrition choices that I would if I was at home which you wouldn’t think would be that awful and sometimes it’s not but there is always that risk of something not working.
You are always bored– Abled people sometimes think that sitting at home all day and not doing a whole lot is like a dream come true but what you aren’t thinking about is how are going to entertain yourself. It’s one thing to have a lazy day or two when you do nothing but when you have to do that indefinitely and can’t get in your car to go do things you may find that coloring books aren’t going to entertain you for as long as they normally would because it gets boring. A few years ago I started my blog because I was not successful with finding a job and wanting something to do during the day that would take up a lot of time. Disabled and chronically ill people are better at finding ways to entertain themselves than abled people because you have to be but you still are all too familiar with being bored.
Some people spend a majority of their time at the doctor- Disabled and chronically ill people often go to the doctor much more than the average person to manage their condition. Some people with Spina Bifida spend a lot of time at their doctor dealing with changes in their health but some people hardly go at all. When I was little I went to the doctor more than I do now because I had more challenges that seem to stay stable as an adult but now I only need to go for yearly physical’s or when I notice something has changed. Doctors appointments are a reality of life for many disabled can chronically ill people because you can’t control if your health is going to change and some people are well enough to work a job. I wish abled people could see how much time a disabled person spends at the doctor because for the amount of time we spend at medical appointments it feels like it should be a fully paid job and it basically is a job without the pay. My doctors are nice people and I don’t mind going to yearly appointments but most disabled people hate their doctors because they are ablelist and would rather be doing anything else.
Living with a disability has some positives but it’s also filled with constant frustrations that abled people don’t have to think about. Many abled people wish they could sit at home all day like disabled people because they think we do nothing all day but what you don’t see is how much time I spend dealing with a stoma issue. When you go on vacation you are relaxed but when you have a disability you are never relaxed because you are always thinking about your health and worrying if something disastrous is going to happen when you are out your friend’s house. I don’t expect abled people who do not have my disability to understand it fully but when you say that it is easy to be disabled without ever experiencing just one of my challenges and that it’s basically like being on vacation you are being ableist. Please stop telling disabled people that being stuck at home is just like being on vacation because it dismisses the challenges of a disability that you may not see. Your job may not be your favorite thing in the world but at least you get a break from it because I would work the worst job to have a break from my challenges for just one hour. A disability is not the worst thing that will ever happen to you and it’s okay if you can’t relate to it but it’s not easier to be disabled because you don’t have to work. Have you thought being disabled is like being on vacation?
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I don’t have a fraction of the issues many disabled people do, and yet I find days taken up with “stuff” constantly, with little to no time for myself. I can’t even describe what the “stuff” is, but there’s a lot of medical stuff and then just a majority of the time lost to being unwell. “…they think we do nothing all day but what you don’t see is how much time I spend dealing with a stoma issue” – I think the fear of judgement, of other people thinking I’m lazy and doing nothing, is what really, really gets me. I had a strong work ethic, I worked damn hard for my degree and in my jobs; losing this is horrible to come to terms with. The judgement and stigma has a lot to answer for because it must make the lives of many of those with chronic illness, pain and disability that much harder than it already is. Fab post lovely.
Caz xx
PS. Did I say before that I love the refreshed look of your blog? I probably did but my memory is awful so I want to make sure you know it’s awesome!
My Rockin Disabled Life
Yeah, there is so much medical stuff that disabled and chronically ill people struggle with every single day that you wouldn’t see or even know about unless you had our conditions. I spend most of my time dealing with challenges and there are still a lot of things I don’t think I could explain. I have been working on my design for over a year and finally had to bite the dust and go self-hosted before I was able to find something that I was happy with but I am glad you like it!