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When I started my blog, I knew I was going to write about my disability because there are a lot of stigmas associated with having a disability that I wanted to break. I knew I was going to create a disability blog from the very beginning but also wanted to create boundaries for myself and not talk about everything about my disability because some things are too personal, and it doesn’t need to be on Internet. On day one I decided my bowel issues were too personal and I was not going to write about them but as I wrote more and saw other people doing it, I decided I was going to because it’s something we need to be talking about. Living with bowels that do not work properly is frustrating and I will not even try to pretend it’s not gross at times because there are things that happen when you have a bowel condition that are so disgusting that I would never share on the Internet but managing constipation is a huge part of my life. Why write about a bowel condition when it can be gross, and a vast majority of people probably don’t care? In this post I am going to talk about why I chose to talk about my bowel issues even though it sometimes makes me uncomfortable.
It makes people feel less alone– When your bowels do not work properly it can be one of the hardest things to live with because people who can go to the bathroom without difficulty do not understand and think it’s funny to make fun of these conditions. It can sometimes feel a little lonely to live with bowel problems because a vast majority of people will only understand part of it and that is okay. Doctors can give you tons of information about managing a bowel condition but at the end of the day, doctors do not have these problems and only treat them. Patients don’t only need access to effective treatment but also need someone that can be a support system for the challenges and there is no better person to do that than someone who also lives with similar challenges. Families can be a great support system of medical conditions, but advocates can be a better one because, at the end of the day, families cannot relate and often will not know the right response when someone is struggling, and advocate would because we have been there. When I blog about my bowel issues, I sometimes feel uncomfortable, but I also feel less alone because I am finding that a lot of people also struggle with similar issues as me which can be comforting to know I am not the only one.
We need to normalize stoma’s– A stoma is not something that all disabled people will need nor is it something that all disabled people would want even if it benefits them. A stoma can change a disabled person’s life for the better but unfortunately, there is a lot of stigma associated with having a stoma because some people can’t get past the fact that there is a hole on their body. A stoma is necessary for some people, and I think we should normalize them but not in the sense that we should stop looking for cures and tell everyone to get a stoma because a cure would obviously be ideal but until that happens not having a stoma is not an option for most people. A stoma is not a normal thing to have but it’s necessary for some people and until there is a cure, we need to normalize them because when you do that it encourages more people that need them to manage medical conditions to get them without shame. The biggest issue I see amongst people considering getting a stoma is that they are listening to the haters who are convincing it’s not necessary and that is where a patient who has one comes in because we know what it’s like and can tell what is true and what isn’t which you won’t always get from your doctor.
I want people to see how much independence my stoma gives me– Some people with my disability have a stoma to manage bladder and bowel problems but not everyone will want one and I think some of the reason for that is not all doctors know how to make one or people get so focused on the looks of it. A stoma is not pretty but you don’t get it to make a fashion statement and if there is one thing that I hope you take away from my stoma posts it’s how much independence it has given me. Doctors can tell you how much better your life will be with a stoma but at the end of the day people without a stoma do not get it and are not going to be able to convince someone to get one as easily as someone who live with it. People need to see that a stoma doesn’t cure you, but it can give you independence and less pain if it’s your only choice.
Some people are more inclined to listen to an advocate– Doctors can give you all the resources that you will need to improve your health, but the sad truth is not everyone is going to listen to doctors and sometimes people cause avoidable health issues for that reason. There are many reasons why someone may choose to ignore their doctor’s instructions and sometimes it’s constantly being gas-lighted by your doctor that makes you not trust them while other times it’s just laziness. You should always listen to your doctor because no one knows your health better than your doctor does but it’s no secret that not everyone will take their doctor’s advice seriously. Your doctor cannot force you to listen to them and if you like to constantly be in the hospital having avoidable surgeries that is on you but most of us don’t like that. Sometimes all people have to do to take care of their health is talk to someone who lives with challenges because sometimes people are more inclined to listen to a patient advocate that lives through challenges than a doctor and if I can help someone take control of their health I am going to try.
Sometimes patients have different ideas than doctors- Doctors will give you information on how to manage constipation and often it is helpful, but doctors don’t know everything and sometimes the things they tell you to do, don’t work as well as you thought they would. As a patient, I cannot diagnose your bowel problems because I am not qualified to do that, but I can give you ideas from my experiences with managing constipation because I know how painful it is to be severely constipated. Doctors can give you ideas for managing constipation because that is their job but the experience of a patient who lives with these challenges should not be overlooked and often someone who struggles with similar issues can give you different if not better ideas for managing your condition than your doctor ever will. Many doctors do not spend most of their lives trying to figure out how to prevent constipation because they don’t have the condition they are treating, and it can never hurt to reach out to a patient to see what they do to improve their bowel health. Doctors spend years studying a condition, but patients live with it and often can provide people with different ideas than doctors which can gives hope to people who are struggling with pain that are not getting anything helpful from doctors and are at loss at what to do.
When you have Spina Bifida bowel problems is possibly the hardest and most embarrassing things some people have to live with. People sometimes avoid talking about bowel conditions because it’s gross and it is but it affects some people, and we need to be talking about it because you don’t get solutions but avoiding talking about it. Some people who read my posts are going to have bowels that work properly and will not benefit from my constipation posts but even though you are not affected by something that doesn’t mean you shouldn’t learn about it. It is important to talk about gut issues instead of laughing at them because when you make fun of a condition you have never experienced its little immature. Doctors are important for treating medical conditions, but you need patients to help people cope with it because a patient can be more understanding of the challenges than someone who has no idea how hard it is. Be kind because bowel issues are something that a lot of people live with and it’s not helpful when you unnecessarily embarrass someone for having condition that you do not understand but it’s the reason these bowel issues feel so isolating sometimes. What are your thoughts on writing about bowel conditions?
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