My disability, caused by limb-girdle muscular dystrophy (LGMD), does not make me a burden. For years, I’ve felt like a burden to those that are around me. It feels like I’m always asking for help.
Sometimes I must wake someone up out of their sleep because I need help in the bathroom. No one wants to disturb someone while they’re trying to sleep.
As a woman and an adult, I just don’t like asking for help. As I get older, I try to not look at it as me being a burden because everyone needs help sometimes. There are times that I don’t want to go places because I may need help with something. Mainly, needing help in the bathroom; that has always been one of my biggest struggles. And it’s not an infrequent need. In fact, I need that help several times a day. I also need help getting in and out of the tub.
Read about different types of MD
I feel like I’m holding people back because I need help. I don’t want someone to cancel their plans because I don’t want to go. When it comes to dating, I feel like a man would see me as a burden sometimes. I’m not able to do everything an able-bodied woman can do. Sometimes I get discouraged thinking about it, and it messes with my confidence.
When I am married with kids, I would like to be able to take care of my house without needing help. I would like to be able to cook, clean and fulfill all my wifely duties on my own. I know I shouldn’t think about it like that because the man that is for me, will accept me and appreciate what I do bring to the table all while being disabled.
When my nephew was born, I didn’t know how involved I could be in his life. I was nervous thinking I wasn’t strong enough to hold him. I was wrong. Being able to feed and burp my nephew on my own made me so happy. It gave me hope that someday when I do become a parent, I will be a great help. I will be able to bond and nurture my child on my own.
While that may not seem like a lot of help to some, it made me feel good. Even when he became a toddler, my arms were strong enough to spoon-feed him while he sat in his feeding chair. We even worked together when I had to try and lift him. It was as if he knew I needed help, so he worked with me to help him.
I know that I am not a burden, and I can and do help others. Giving ideas or advice is also a form of help. There have been times when my friends and family have said, “Oh, I wasn’t thinking about that,” or “You really helped me to realize this.”
Help comes in different ways, not just physically. Helping someone get through a difficult time or being there for someone matters. Those of us who live with disabilities and rare diseases can bring a lot to others’ lives. Although I can’t physically do everything on my own or how I would like to, I know I can be helpful at times.
I had a cousin who recently passed away and she told me before she died, she understood how I feel. My cousin was a very independent lady but before she died, she could barely get off the toilet on her own. She experienced that for a few months before she died, so just imagine years of needing help like that. If you’ve never really had to ask for help, especially help in the bathroom or getting dressed, you’ll never understand.
For those who feel they’re a burden because of their disability, please know the value you have for others and the reasons why you should not consider yourself a burden. I know it’s hard because I still struggle with feeling like I’m a burden. But we are not burdens. Everyone needs help, some more than others, but that’s life. We can’t help the fact that we need help physically, but we can change the way we look at things and realize that we matter, and we are helpful, as well.