Have you ever wondered what it is that makes us sick? I have 52 first cousins, seriously that’s no joke, my family is HUGE, yet here I sit, the ONLY one “blessed” with a chronic illness from each side of my family. These wonderful hand-me-downs skipped 51 other kids in my generation and then there is little old me. I have Rheumatoid Arthritis and epilepsy. Each quite a mild case but saying you have a mild case of RA or epilepsy sounds ridiculous to me. Seizures are debilitating no matter how few and far between and my mild case of RA has me right in line for my first joint surgery/replacement around September-October ish. So that’s what MILD chronic illnesses get you.
It could be worse. Yup I guess you’re right. I could be unable to work, I could be stuck at home day after day on disability. That would be definitely worse. I’m pretty social so it would be difficult for me to stay at home. Telling people with a chronic illness it could be worse feels exactly like telling someone with a broken leg “at least you didn’t break both legs!” We understand it could be worse, I know I don’t have cancer or severe cases of both illnesses but please don’t tell me to see the bright side of things. I do that all day. I work, I’m an active part of society, I entertain guests happily at my house. I attend my son’s hockey games and functions, I go out with friends. BUT… in the raw moment that I become unhinged and I feel like I need to take a minute to grieve the life I thought I was promised… please let me. Please just be there to listen. That is what the chronically ill need. We just need an ear sometimes. Then the feeling passes and we go on our merry way arm in arm with those we love. It’s that simple. That’s all we need. We don’t need you at all our appointments or to treat us like a glass doll full of cracks. Sometimes I’m torn between “please treat me like a regular person” AND “please understand I’m not the same as you”. There’s a fine line that needs balance. I’m not too sure how you can manage that but that’s your job ok? Your job as a partner or friend or child or loved one to the chronically ill. Your role is to find that balance. My role in this is already hard enough.
I am not defined by my illness. I’m not the girl with Epilepsy or RA. I’m Mendy, the hockey mom and the wife. Mendy the Human Recourses Coordinator. Mendy the fun, caring, compassionate person. Mendy the girl who likes to bake and cook and be social. Mendy the silly one. Mendy the baby hogger. Mendy the encourager, the spirit lifter, the shoulder to cry on and the hand to hold. Mendy the great friend and teacher. I have so many titles there just isn’t room for Mendy the chronically ill girl.
You can find the author of this post, Mendy, at http://feelingswell.wordpress.com
Her blog takes you through her journey living with Rheumatoid Arthritis.
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