Yesterday was the kick-off of invisible illness awareness week! I wasn't able to post because I had an endoscopy yesterday and I am STILL in the hospital but I decided I feel decent enough to post today. So here it goes! This is my life with an invisible illness. This is my reality.
Have you ever gotten the flu or have been so sick you just feel like you can't even do anything? That's how I feel EVERYDAY. I look like your typical teenage girl. I go to church every Sunday and hang out with the best youth group in the world, I play soccer, I go to school everyday, I love music, and I would probably start a conversation with anyone I meet. Little would you know I have an invisible illness that effects my life on a daily basis. I am constantly in pain, fed through a feeding tube, and spend countless hours in doctors offices and hospitals hooked up to tubes and wires all while trying to keep a brave face and moving on like everything is okay. Looks can be deceiving I don't look sick and that is the beauty of it all! You can't see my insides. If you looked at my body from the inside out you would see a completely different story. The best way to describe it is like picturing World War II in your head just for a few minutes...that is what is going on in my body right now my body is taking a beating except there are no sides it's just one side my body beating itself up. Autoimmune disorders suck!!
I have been through hell and back with these illnesses. You always get those comments "but you don't look sick" people think I'm lying and it's disgusting. It's what people don't see that always gets them. They don't see the countless IVs, blood draws, needle pokes, doctor appointments, hospital stays, holidays in the hospitals, birthdays without cake, surgeries, procedures, medications, treatments, CT scans, and all the other medical stuff/supplies that we have to deal with daily. Would you like to come live in my world for a day? It's full of pain, nausea vomiting, medication, and a feeding tubes. I don't think you would want to it hurt so much inside and there really isn't much they can do about it.
Being sick so much has brought me up to deal with the pain. I now I have a pretty high pain tolerance and I can go on caring around like everything is all fine with a smile on my face everyday and you have no idea how bad my pain is. Why I don't want you to know because all you would do it pity me because I don't need it I can do anything you can do I just have a few extra things I need to do. Well...I can't eat but you get my point. If there was one thing I wish people would stop saying to those with a chronic illness it would be "stop complaining" or "but it could always be worse." I think I have ever right to complain I'm in pain 24/7 you wouldn't be too happy if you were in pain either. No you complain about how you can't go to school because I have this little cold. All while I push myself to go to school every morning. This last one right here is the one that makes me angry "but it could always be worse." Personally I don't see how things could get any worse. I mean maybe they can but just because someone else is hurting worse than me doesn't mean my problems don't matter because mine do just as much as the next guy. Basically by saying that it could be worse you are saying well what you aren't going through isn't too bad so you will be okay. I am still suffering too and I wish people would see that constant pain that I feel. I'm sorry if someone has it worse off than me but I am still having a hard time too.
Please remember not all disabilities are visible you can't see what I battle on a daily basis you only hear stories. You can't see my insides you are not a medical genius who has everything figured out in this world because if you did then I would be cured and I wouldn't be sick and I would be like worshiping you right now for curing me. Anyway Happy Invisible Illness Awareness Week! Remember Mitochondrial Disease Awareness Week is next week!!! You must be wearing green!!!!!! :D
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