Chiari Online Support Group

Support Group - Explaining to Family - How?!


Does anyone know how to explain this to family? My family isn’t big on researching or even wanting to hear medical descriptions, they want it in simple, lamest terms. I’m at a loss as to how to do that… doesn’t sound right when I do.

Also, how do you get a support group set up in the event you need surgery? I start discussing with a surgeon this week if I need surgery or not. No one in my family can take time off from work, or financially afford to help care for me every day after a surgery like this, and after doing research on the surgery itself, what it entails, and talking to others who have it, they say have a strong support group to help care for you 24/7 until you’ve healed and are able to function on your own again.

How do you get support if your family and friends cannot afford to take time off from work or financially afford to take care of you or hire a nurse to do it for them? Not wanting to go through this all alone, although it already feels like I am. Cannot even find support groups in the area my mother currently resides in.

Any advice (from experience), or guidance will greatly help!


Explaining to anyone really. My dtr. Is 7. Having to repeat myself and get people/doctors/teachers etc. to make accomodations and keep me in the loop has literally turned me into a raving psychopath.
I really think we should demand more of other people and make them research it. If they want a relationship or a good one, send them a link.
Let them know there will be a quiz when you are done…


I’m sorry to hear you have to repeat yourself constantly! I know the stress of this. My mother is slowly starting to get better with dealing with my symptoms and how it affects me, for which I’m grateful, we still argue now and then at times. I agree, making people research it, sending a link, and then quizzing them is a brilliant idea! You are amazing for that! I’m going to try it and see what happens :slight_smile: :laughing: