Chiari Social Questions

So, I'm new to the Chiari world and learning how to deal with it's symptoms. The thing I'm currently confused and troubled by is who to tell about my condition and how often I'm "allowed" to talk about it. I've always been the strong and silent type (aka suffer quietly), so talking about what's bothering me goes against everything I've done. But Chiari is playing a bigger and bigger role in my life, and handling it quietly is getting harder. How many people should I allow to know about this? How much should I talk about it when I'm having a bad day?

If you could go back before you told everyone, what would you differently? Would you keep quiet? Or would you let everyone special or everyone you're involved with know?

I would greatly appreciate your help--I'm so confused!

Hello! I can relate to your post. When I was first dx I wanted to tell the world! For once in my life I was not “crazy”…for years I would hear the phrase “its all in your mind”…now to have a actual reasons for the dizzyness…all of a sudden black outs…etc…I think I was more in shock the first day…I told a few friends who made me more nervous…we researched for days! Drove me crazy with all the findings! So I say …tell everyone whom you feel will comfort you…trust me you will neeed the support! I’m new to this also…you can talk to me! :slight_smile:

Hi! I have a hard time talking about it also. I've been diagnosed for over 3 years now, and in the beginning, I wasn't sure how to even explain what I had. I just played it off like "oh, I have a brain thing, my brain is to big for my skull, that's why I am so darn smart" and left it at that. My employer has been way more understanding since I sat down and explained what it is. I was so worried if they actually knew, they would treat me different. During the convo with my director, I told him how I try really hard to hide it when I am not feeling well. He said that he knows the days I am not feeling well, he said its in my body language; hunched over, rubbing my neck and face, low tone in voice, etc. It really did catch me by suprise because i really thought that I was really good at it.

I was diagnosed about 2 years ago. It was great for me and for my husband to finally know what was going on. However, my other family members and most of my friends don't understand so I don't really talk about it too much. I do have one friend that lets me complain to her when the headaches get too bad or when I start having balance issues. She doesn't understand Chiari either, but she knows that something must be bothering me if I am complaining. I agree with the others that if someone doesn't respond like you would like, don't take offense. I had never heard of Chiari until I was diagnosed so I probably would have thought that anybody with this was "crazy" :) Remember that you have this forum to vent to and to get information from. Good luck

Hello Surya, as someone who was recently diagnosed, I found out that when I told people I got blank looks, mainly they had no idea what I was talking about. Though I did find some surprises in my face book friends. A good friend of mine put me in touch with a friend of hers who had been dealing with Chiari for years. She helped to point out that if you give your friends the information on places that they can go to look things up, information about CM then it made the discussing of your health problems easier with those around you.

As for would I do anything differently, I can't really answer that one, since I'm not to sure what my whole story will be for now, but I do know that those friends, even if they never truly understand what is happening to you, should and if they are true, will be there to support you. I was told I was crazy for a while, that I was "making it up" to get attention even by members of my own family, but my true friends who are more family to me then most were the ones that stood by me, and help me every day. I hope this helps in some small way.

I found that sharing this with family and friends for the most part helped them understand me a bit more, made them more understanding. I have had so many "issues" and come to find out they are all a sypmtom of CM also comforted me to know that I am not some hypochondriac, as well as others around me. The down side I had with sharing this info is that some of the people ( although it is out of care and concern) constantly ask me how I am doing every time they see me, and not just in a general way, they mean in relation to my condition, and that gets really old really fast. I was glad to share the info but I dont want to talk about it all the time, there isnt really much to tell except that I have my good days, my bad days and some days that put me in the ICU or ER. Its about your comfort and if you think getting the particular persons support will help you, or if telling them will help in some other way. I wouldnt change the way I handled it.. there are pros and cons to both, just have to figure out whether the pros out weigh the cons or vice versa.

my story is no one wanted to understand and now i have no friends or family i am stuck in my own prision. i feel my husband resents me due to not having a social life people went their own way aand put the blame and hate upon my shoulders. so for those that have people are very lucky. so i am pretty jaded with people and it is hard to get to know people for me however not much really want to be friends once they find out that i am sick

Everyone who knows me knows about my condition. I was sick and forced to cancel plans and such for years so they knew something was wrong. Pretty sure several people suspected I was a hypochondriac. So basically most anyone I talk to on a regular basis knows, some seem to understand more than others. I don't find it anything to be embarrassed about telling someone.

Hey guys, sorry its taken me so long to get back to everyone! I just started classes again. :)

Thanks for all of your responses! I really found them helpful, and I'm still figuring it all out. I know I can trust the people who know, I'm just nervous about everyone else.


This is a great question. I don't have a problem telling people about Chiari, my main problem is people understanding how much it affects my life. I think my family is afraid of Chiari and wants it to just go away.

I feel like having Chiari is like dragging around a heavy, invisible ball and chain. It's always there, affects everything I do, makes me feel like everyone else gets more energy 'points' per day than I do...but other people can't see it or understand it.

I feel lucky that I had 2 years of relief, due to the surgery, but it sucks because now I feel like it is back in my life again.

I'm sorry you have to feel that way. And I hope you find people who understand and are willing to accept what's going on.

I have a family and a few friends who try to understand, and they do a good job of it. I hope you can find people like them.

Having an invisible illness sucks.(understatement)

When I first found out I have Chiari and what it is, I told everyone. Not one of my family or friends even heard of it. I printed out pictures and my MRI to better explain what exactly I have. I did get a lot of too much brain jokes. After surgery, they seem to think that I am cured. When they ask if surgery was a success, how do I answer yes, and no. Why did I have the surgery then? I find it much easier now to be quiet and talk about it only when the time is right. Like Wendy said, people can't see it and can't understand it.

"You don't look sick"......... but I am.

I've just been recently dx too and still havent told all of my family. I think its more of how I think they will act since some ppl dont believe you can have our problems chronicly. I try to hide as much from my kids so that they still see thier daddy as the strong silent teddy bear. It's harder at work since I'm a Captain on a Fire Dept. You really are close as family and my guys can tell whenever something is wrong that day and still havent told them and they count on me with thier lives. I guess you just have to come to terms with it and accept all of whats ahead before you can start telling everybody. Should listen to myself on that account.