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7 Things Most People Don't Know About My Life With Cerebral Palsy

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Anyone who has a disability can usually tell you what it’s like to have their particular condition. But there are things people might not know, because talking about every little detail about your disability can be a daunting task.  I have cerebral palsy, and there are still things that even my husband might not realize.

1. I love holding hands and cuddling, but my body often will not allow it. For some reason, my body becomes very tense when someone wants to hold me in any form. This can be very frustrating for yourself and partner when you’re trying to cuddle or hold hands. Often I need to hold my breath to keep my body still so I don’t move. It’s frustrating for me, because I love cuddling and holding hands, but my body says no.

2. I have a great bladder, but I still need to use the bathroom. Most people forget that you do need to use the bathroom, even though it can be difficult to get to one. I hate asking to use the bathroom even when I really need to, because I know it’s not easy to take me. So, I often hold it in pain and politely refuse to drink until I can get to a bathroom.

3. I like to be independent, but help is appreciated when offered. When I’m on the floor, I can do many things on my own, which is terrific. But sometimes in doing so, I get tired out or I hurt myself. I’m not being lazy when asking for help. I’m just trying to be nice to my body.

4. Even though I can’t get my own food, it doesn’t mean I’m not hungry. Not being able to feed yourself is as frustrating as not being able to use the bathroom by yourself. I still feel hungry between meals. Comments on the amounts I eat or drink aren’t necessary because you’re helping me. No one analyzes how much you eat or don’t eat. So please, when I ask for a second helping, no need to comment to make me feel bad.

5. My muscles and bones ache daily. I’m never going to complain about every ache and pain I have, but that doesn’t mean they don’t exist. My body moves 24 hours a day, 365 days a year. Even when I “relax,” my body moves. Constant moving wears on your muscles and bones. So please don’t put on a guilt trip when I don’t want to be in a manual chair or do something that might make me more sore. Certainly invite me, but if I say no, please understand why.

6. My children help me with some things, but I didn’t create them to be my personal attendants. Like any kid, my children help us out. I believe helping each other is a normal family action. You might see my toddler pick up my cellphone if I drop it in a store. You might see my daughter getting out my credit card so we can make a purchase. However, you won’t see them cooking meals, dressing me or being responsible for my care. Once in a while, you might see them feed me or give me a drink. But know that I’m helping them as well, like any parent would. My children know we help each other because that’s just what decent people do.

7. I am lucky to have my husband, but not because he accepts my disability. Not to sound snobby, but I never had difficulty getting asked on dates or being in a romantic relationship. Many guys accept my disability and would want a relationship with me. I’m lucky to have my husband because he’s funny, kind, considerate, handsome, likes to have fun, responsible and a good cook.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 12, 2016
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