Woke up to a horrible comment on my Facebook the other day, but the day turned out alright in the end. Sometimes you have to look past the stupidity of people. You can’t educate those that don’t want an education. I decided to delete the negative comment, but wanted to share with you readers what I said in response. I don’t advocate retaliating or getting nasty, but I felt like something needed to be said.

“You don’t know anything about me, and it is OBVIOUS you don’t know anything about my condition. Before you make a snide and hurtful comment on what is a labor of love, why don’t you educate your self. Chiari is a progressive condition. I also have Ehlers-Danlos syndrome. My surgery WAS NOT A FIX. Do you want to know what my surgery did for me? It kept me from dying and made me WORSE. Not that its any of your business, but I was there for my husband EVERY SINGLE DAY he was in the hospital. I am not supposed to drive, but I drove and hour round trip every day for two weeks to see him and help take care of him. Even when my pain was at its worse, I still was by his side with no thought for myself.

This condition will kill me at a young age, but I guess I should just “take the fix the drs gave me and be happy” as you so eloquently put. Please educate yourself before you start talking about something you have no clue about. That I needed to get over my condition, I should be happy with the fix the drs. gave me. Was I even there for my husband when he got sick? I need to get over my condition and move on.

I gave myself a few days to think about this post. I wasn’t sure if I should give this person another thought or a minute of my time, but then I realized something needed to be said. People with invisible diseases face prejudice EVERY SINGLE DAY. It needs to stop. We need to stop judging others period. You have no clue what someone is going through. How about the next time you open your mouth to say something ignorant, or decided to hide behind your keyboard and make comments, you stop and actually think about what your saying. Ask questions. I can say for myself I LOVE when people want to know about my condition, because it means they care, and want to learn.

Ok. Rant over! Now on to the positive. I was recently asked to write for Hope Soup. So far I have written three posts for them, A Child With ChiariWhat You Don’t See, and Intimacy and Invisible Disease. My post “A Child With Chiari”, broke records for viewership on the blog! I am also helping Hope Soup set up and run a foundation, The Hope Soup Foundation, to help others with invisible diseases get the help they need to get treatment, connect with others, and hopefully find answers. So Life with Chiari has been a busy gal! I am not giving up on this blog either. I will still be writing different material for both. After all, my webmaster has to eat!


So dear readers, please visit me over at Hope Soup, and be on the look out for the foundation to get started!


Stay positive!