Daily Life | IBD | Relationships
Some days I feel like the hardest part of life is being stuck in a body that doesn’t work, with a brain that never stops. I’m often put into the position where I have to cancel or modify my plans simply because my body can’t handle it. The worst part about it is coming to terms with my limitations. I’ve also come to learn that it’s not my responsibility to make sure everyone around me understands my limitations.
If the people in my life aren’t able to be understanding, it often causes conflict within my personal relationships. I’ve lost friends because of constant cancellations or because they refused to do something more “low-key” to accommodate the fact that my brain would love to see them, but my body has decided it’s not a great time. It doesn’t matter if the plans were made 12 hrs or 12 months in advance; sometimes, I just can’t show up. I’ve missed weddings, funerals, and even my son’s first day at his new school because I was hospitalized. Those who can’t wrap their heads around my disabilities (because, you know, they’re all invisible) have meant me with eye rolls and harsh tones.
These are the unsupportive people that tell me I’m “so lucky that I get to sleep all day.” I want to scream when people say that. I’m not sleeping for sport, sweetie, and there are 10000 other things I could be doing right now, but I can’t feel my hands or keep my eyes open, so my Honey-Do list will just have to wait. Another backhanded statement I hear a lot is that I’m “so lucky to not have to work, I’d love to stay home with my kids and do nothing all day.” This particular statement is like a hot knife to my heart, and I wish more people would understand that. First of all, If it weren’t for my wife, myself, and my son would not have a roof over our heads. There is no question that, for me, disability is not a livable wage. Secondly, prior to my health declining, I was a single mother, working three jobs, 70 hours a week, and still busting my butt to make sure my son learned his numbers and colors. Being told that I’m so lucky not to work kills me. I worked for 5 years to get my Associates’ degree and my Medical Assisting License and could never even use it. So let me be the first to say that statement is more of an insult than a compliment.
These limitations have also affected the way I can parent. Like I said, before my health declined, I was all over the place. I’ve always been completely hands-on with him, but unfortunately, he was only 3 when I got really sick, so he doesn’t remember the person I was beforehand. I was a single mother and could hardly take care of myself. If it wasn’t for my sweet boy realizing Momma’s limitations so early, things could have been very different. If there is anyone on this earth that I know I can depend on, it’s him, and that has to say a lot at just 10 years old. My boy knows if we have plans as a family and I’m not feeling well, he can carry on and make memories with his Bonus Mom (the name he prefers to call my wife instead of stepmom) and then come home to me and tell me all his adventure stories. He knows if there is something he wants to do and I can’t physically do it with him, Bonus Mom will jump in, and I’ll cheer from the front row.
At the end of the day, don’t let your limitations be what holds you back in this life. Identify your limitations and do not break through that line. Ask your friends and family to respect your limitations; always remember being chronically ill doesn’t mean you have no voice! We have to accept our limits and spread out love in the ways we can, not the ways we beat ourselves up over.
Michelle has had IBD symptoms most of her life but was diagnosed with Crohn’s at 18 in 2007. At 23, she experienced fistulas and abscesses that ultimately hit her pretty hard, leading to many other health problems. After struggling to stay working full time in the medical field Michelle chose to apply for disability and today, at 31 years old she is a stay at home mom to her 10 year old son and new wife!
Michelle came across GWG while in the hospital recovering from her Ileostomy surgery. Since then she has been part of the Pen Pal Angels and the 2018 Newbie retreat, and also a moderator on the Facebook forum, and now a dedicated blogger. Her interest in blogging comes from her late best friend who use to push her to do it. She decided to take the plunge into writing for the GWG forum because the sisterhood she’s gained through GWG has gotten her through some of the toughest patches in her life!