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When you are disabled sometimes it is easy to focus on the challenges and stress about things that we cannot control. If you are disabled sometimes you may need a little more help to do basic tasks and there is nothing wrong with that but often it can make disabled people feel guility for asking for help because it can feel like your bothering other people. Most disabled people have felt guility for needing help at one time or another and it’s totally normal to feel that way but there are some things about life that we sometimes feel guility that we know we shouldn’t. I would consider myself an independent disabled person because I can do most things without help but because of my disability sometimes I do require more help than abled people and like most disabled people I have felt guility for not being able to do certain things. Disabled people should not feel guility for not being able to do something because of your disabilities but sometimes when we see our abled families member do things with ease we do. In this post I am going to talk about five things that I have felt guilty about that I know I shouldn’t be stressing over.
Having a stoma issue last minute– I have lived with a stoma for most of my life and for the most part I have them under control because I am at home most of the time but when I have to go somewhere it can stressful. You can do everything to prevent a stoma issue but unfortunately, you can’t totally prevent them and sometimes you will be doing good all morning, and five minutes before you have to leave you have a stoma issue that must be dealt with at that moment. I sometimes am slow in the morning and make people late because I could not get moving but most times I have a last-minute stoma issue that I could not have planned. People that do not understand sometimes give me the impression that they are annoyed I am making them late and think that if I would have been a better planner that I would not have had a problem but the truth is you can only do so much to prevent stoma problems because a stoma only helps manage bowel issues and it doesn’t fix them. You should not feel guilty about having a stoma issue last minute because you can do everything to prevent yourself from having an accident but at the end of the day, it’s out of your control and things are going to happen. Disabled people can’t change their disabilities but people can try to be more understanding of challenges that you have never experienced because it’s not always about disability but it’s how you react to them.
Asking for help- I am not that great at asking for help and it’s something I have always struggled with because I was raised to do as much for myself as I can and when I do need help sometimes it feels like I am bothering people. I think it’s important to teach your disabled children to do as much for themselves as they can because if you want to do everything for your disabled child they will be completely dependent on you. I was taught how to do basic self-care as a young child and I can do most things for myself but because of my disability sometimes I do need help getting things on the top shelf but it can be so hard for me to ask for because I always feel like I am bothering people even though I know I probably am not. The only time you should feel like you are bothering people is when you are asking for help on things you know you can do but are too lazy and think it would be easier if someone for you. You should not feel guilty for asking for help in general because sometimes it’s safer to have someone else help you than to try and to get a cup of water yourself and fall. People always are saying that you should not ask for help because it’s a sign of weakness but getting help is not weakness and it’s a sign of strength because it takes a strong person to recognize that you can’t do everything on your own and for some people not asking for help is not an option.
Wanting more accessibility- When you are disabled sometimes it can be hard to leave your home because not a lot of places understand accessibility and are willing to accommodate a disabled person. Accessibility is important for disabled people but sometimes people don’t understand that and think that making things accessible costs too much and is optional but for many disabled people accessibility is not a choice nor is it something we can always work our way around. When places are not accessible and you have to advocate for more accessibility sometimes it can put disabled people in an uncomfortable situation and make them question if it’s really necessary or if we just sound whiney. You should not feel guilty about demanding more accessibility because it’s what disabled people require and I don’t there is anything wrong with not wanting to face unnecessary barriers. It is important to call places out that aren’t even trying to be accessible because people need to know that my disability is not the problem and that it’s your lack of accessibility that makes disabled people face unnessary barriers and feel guilty about advocating for more accessibility.
Canceling last minute- When you have chronic pain there are going to be days when you are able to do more and then there are going to be days when the only thing you can do is watch Netflix. At my sisters’ wedding, I did not dance like I had at previous weddings because that was before I had lived with chronic pain, and my goal this time was to get out of there with no migraine which I don’t think would have happened if I was spinning myself crazy like I had done at previous weddings. I think I would have been able to do more if the music was quieter but you’re not going to get that at weddings and the volume was enough to trigger a migraine. When you live with pain sometimes it can be hard and people often don’t understand why your are not moving like you used to because joint pain is invisible and to them it doesn’t look like you have any pain at all. You should not feel guility for giving yourself more rest days because sometimes it’s necessary to take a rest day. Chronic pain is unpredictable and sometimes you are going to have to cancel things last minute to work on self-care and people are not always going to understand it but it’s not your job to convince people that your pain is real.
Your health changing and needing surgery– I have no idea the exact number of surgeries I have had and I am guessing that it’s around thirty because there comes a point when you stop counting. Some surgeries I have had were medically necessary and if I didn’t get them I would have died but some of them I got to improve my quality of life and to gain independence. When you are disabled sometimes it can feel like you have good health and out of nowhere you go to the doctor with the hope that it’s a humor the doctor visit only to be told that you have bladder stones. Abled people sometimes need help recovering after a big surgery but not as much as I would because not all my muscles work and when one is down it significantly reduces my quality of life. I take care of myself and have never needed to get a surgery because I was lacking in self-care but sometimes something about my health changes that will only improve with surgery. I am fortunate that I have a large family and don’t have to hire a lot of help but sometimes I do feel a little bit of guilt because my surgeries not only inconvenience me but also my caregiver. I don’t generally feel a lot of guilt for needing help after surgery and am grateful that there will always be someone there to care for me but I do sometimes feel kind of bad when people start questioning my medical decisions by saying what did you do to cause this medical problem. Health sometimes changes when you are disabled but you should not feel guility for having poor health because you can be doing everything right and still need surgeries.
When you are disabled sometimes you need more help to do basic tasks and that is okay but not you shouldn’t feel guilty about health issues you cannot control. Disabled people sometimes feel guilty for asking for help because it can feel like you are bothering people in my experience a lot of that guilt comes from the way abled-bodied people react when we are in an uncomfortable situation. When you have a disability, things are going to happen that make you uncomfortable and the best thing people can do that will not embarrass is to act normal and don’t bring a lot of attention to the issue because it’s when people laugh that I had an accident that makes disabled people feel guilty. I think all disabled people including myself have stressed about things about their disability that they cannot control but we should try not to because sometimes the added stress makes things worse. It is natural to stress over stoma issues when you are with a group of people that do not understand but I wouldn’t think about it too much because you can’t control how other people’s reactions and you can only control your own. What have you felt guilty about that you know you shouldn’t have?
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