ok i know that can't be the only chiarian that just doesn't have enough energy throughout the day. not enough energy to do the dishes or walk the dog at the end of the day.i am only 16 and most days i don't even want to get out of bed in the morning. and when i don't have enough energy to do my chores i get yelled at majorly by my parents and called lazy. i get called lazy all the time, not only by my parents. and sometimes i know its not my fault. but most of the time i can't help but listen to them and blame it on my self. help? does anyone else have this problem? and for those parents out there with kids that have chiari, do not blame it on them, its hard enough for use on our own, do not make it worse.
I know how you feel, sometimes people don't understand at all. For the last 6 years have been like that for me lack of energy to do much which has only gotten worse the last 6 months. I was told that i have Chiari type 1 Malformation only a little over a month ago. I have told everyone that i'm around to research it and i explained what it is and what it does to the best of what i can. I got a Chiari Awareness hoodie and pillow for Christmas and the hoodie came with cards and i handed those out so that my family could understand what was going on. I'm sorry your family and others are not understanding just how this affects you. I know it took me 6 years of Dr's telling me nothings wrong its all in your head. To date I have had 12 surgeries most of which have been since 2010 and i am finding out that the chiari could of caused the other issues i had. Things will get better i know its hard now but things will get better. I am the mother of 2 kids and i don't have the energy to do much with them let alone the house and my mom isnt in the greatest shape either so it is hard but remember I know i cant speak for everyone but im here if you need to talk.
HI, Lauren, sorry you're having such a hard time. I think being a teen with a chronic illness is much harder than people realise. There is the bias that teens are hard to deal with being irresponsible, immature and moody, and it all is made worse when doctors say that you're ok. It's like not having thumbs and being blamed for not having a nice handwriting.
There is yhis article https://www.psychologytoday.com/blog/turning-straw-gold/201403/the-extra-burdens-faced-young-people-chronic-illness that I found helpful personally, but I just had the thought that maybe you could have your parents read it and they would understand you better. There are other very helpful resources that you could share with your family and friends. If you already haven't found them, I can give you some links, but some of them are on this site under the Info for Members.
Sorry if something didn't make sense, I'm so tired now that I can barely put a sentance together. haha
Hang in there and don't let the inconsiderate words hurt you! You are so much stronger than you think!:) Direct your energy in the right direction and things will get better! And by that I mean- educate yourself as much as you can about Chiari, pass that knowladge to your closest ones, and don't forget we're here for you!
i found this quote online and loved it. "i fight for my health every day in ways most people don't understand. i am not lazy. i am a warrior."