When I started my blog, I knew from day one that I was going to talk about my disability to help others who do not have my disability understand the challenges of living with a physical disability and to help other disabled people who also are struggling with similar challenges. My disability has a lot of challenges that I don’t always share and one of the things that I had to think about when I started blogging about health is what I was going to share with my public audience and what I wasn’t. My bowels do not work properly and when I started my blog, I originally planned to not write about them because they can be embarrassing, and it makes me a little uncomfortable but as I became a more experienced blogger, I decided it was important to not to leave out major details about my health. Why do I write about things that make me uncomfortable? In this post, I am going to talk about why I chose to write about my bowel problems even though it makes me a little uncomfortable.
It helps others feel less alone- When you live with chronic constipation or any other type of GI issue sometimes it can feel lonely because most people have bowels that work properly and don’t understand how embarrassing it is to be in your thirties and still have random accidents. I write about my bowel problems because it can feel lonely and sometimes people feel like they are the only ones struggling. Writing about my bowel problems makes me a little uncomfortable but it’s so important we talk about them because although some people may struggle going to the bathroom more than others pooping is a natural bodily function that we shouldn’t be embarrassed to talk about. People with GI problems need more support because often you find yourself in embarrassing situations that are out of control, and it can be comforting to know that you aren’t the only one going through these challenges.
I know my body better than any doctor– People sometimes think that doctors tell you everything you need to know to manage constipation, but the truth is doctors don’t tell you every constipation remedy, and a lot of the time you have to figure them out yourself through trial and error. Doctors will tell you what laxatives they think you should use to be able to have a bowel movement but these things don’t always work and sometimes I have to do something slightly different than what my doctor advised I do. My doctor may be able to give you a better science lesson about my disability than I ever would be able to, but advocates spend their entire lives figuring out what works and what doesn’t because we live with these challenges and have no choice. I write about my bowel problems because I have been struggling with constipation my whole life and can tell people what has worked for me and what hasn’t from my lived experiences. Disabled people don’t need to attend a lecture on how to prevent constipation because we have likely tried all the weird remedies with hopes of having less pain. I blog about things that make me uncomfortable because I know my body better than any doctor and even though the remedies that work for me may not work for everyone it may help some people who aren’t getting a lot of help from medical professionals.
We need to normalize stoma’s- Most people with my disability will need to use catheters to go to the bathroom because your bladder and bowel muscles often don’t work properly and it’s the only way but not everyone will have a stoma. There are a lot of ways to manage bladder and bowel problems with Spina Bifida and you don’t have to get a stoma and that it what I thought was best for my health, but you don’t have to do the same thing and as long as you are going to the bathroom that is all the matters. A stoma will change your life for the better, but some people may feel embarrassed to get one because there is a lot of stigma and there are a lot of things about stoma life that doctors don’t tell you. A stoma is not something that everyone is going to want or need but we need to start normalizing stomas to help people who would benefit them to not feel embarrassed to get one. Doctors often will tell you only the positives of a stoma because they get paid a lot of money to make one which is why it’s so important that as advocates, we normalize stomas to help people understand that there are some positives to living with a stoma but there are also some negatives. We need to normalize stomas not because we shouldn’t be looking for cures but because we need to do it to help people realize a stoma improves your life and is not a fashion statement. The best people to do that are disabled people who currently live with a stoma.
It helps better my mental health- Before I started blogging about personal health issues, I would get very embarrassed when I had an accident but now since I have been blogging about personal health issues for a while I don’t get embarrassed as easily because if I can give complete strangers details about my bowel regimen, I shouldn’t feel embarrassed around loved ones. Writing about personal issues helps others but it also helps me because I have gotten support from people in my community that my family can’t give me, because they aren’t disabled which has helped me grow and not be as embarrassed when I am having a bowel movement that became a disaster that I need help cleaning up. At first blogging about personal health issues feels weird because there is always the thought in the back of your mind that people aren’t taking anything away from it and are only getting grossed out but the more you do it the easier it gets.
It is a big part of my life- I have a lot of neurological and orthopedic issues, but I spend a vast majority of my time dealing with bowel problems and it felt so wrong to leave out the one part of my health that I struggle with the most.
Blogging about personal health issues can be hard because a vast majority of people do not understand what you are going through, but it helps to not think about what others may be thinking. I chose to blog about my chronic constipation because out of all the challenges I face managing bowel problems is the most difficult and doctors don’t always give you suggestions that you haven’t tried. It is stressful to live with bowels that don’t work properly because not everyone understands that you can’t cure yourself by eating better and the only people who truly get how hard it is are disabled people. Writing about personal health issues makes me uncomfortable especially when I start thinking about how my family reads my blog but when you are vulnerable people appreciate that and feel less alone. If you are an advocate, it is not a requirement to write about personal health issues and you can choose what you want to share but if you do choose to write about personal health issues try to remember that your experiences matter because you can help people in ways non-disabled doctors can’t. Do you write about things that make you uncomfortable? If you liked this post, please leave a comment below and share it with your friends.
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