Chiari Online Support Group


I was diagnosed with chiari over 10 years ago when my kids were young. They are now young adults and I have been pretending I am fine for over a decade. They are noticing that I go to bed too early , get too many headaches, can’t always go places … I am so frustrated. Most days I am very positive but, today I am just so tired of pretending and working and fighting…

Thank you MRI 3 months ago just tired and dealing with I guess normal kid stuff but some days are exhausting and I’m sure they are for everyone… Thankful for so many things but wish sometimes my daughter didn’t think I was just tired sometimes I want to tell her the truth and other times I just want to be normal…

Kirb22, I'd like to share something about myself with you from a daughters perspective. I grew up with a mom who had serious health problems and couldn't do the things other mom's did. I'm not sure she ever sat down and really explained to me what was going on for her. Would it have made a difference to me? You bettcha! Especially as she passed away when I was only 18 (she was 43). That was 35 years ago .... I still wish I'd known and understood better. I'm not sure that all the secrets (and some lies) helped me and my younger brother out any.

I started having problems that interfered with work and family life when my youngest was 2: she is now 9. My contributions to family life have been severely to moderately affected throughout that time period which includes health decline, surgery, and partial recovery. I have regrets over my ability to contribute to family and how I behave as a parent (irrationally angry at times and also not able to do all the fun stuff). However, they are aware of mommy's wonky brain, my husband makes jokes and gently pokes at me, my kids share in the humour and check in on what my participation level is, they let me know if something is coming up that they would like me to do with them so that I can plan for it. It works.

Would I like to have peak energy and abilities of a 40 something year old woman? Yes! But, I also have a supportive family that allows me to participate at my level, welcomes me when I do join, and quietly allows me to excuse myself gracefully when I can't. People can not accommodate needs if they do not know what is necessary. I am not saying that I expect people to "understand". That concept is highly touted as being so important and has become meaningless in my mind. But t I do give to others the information they need so that they may comfortably plan to include me, but I also graciously let people know of my attendance or participation plans when they differ from the norm. For instance, I might let someone know that I would love to come to a birthday party but that I will be leaving early.

Enough of the preachy stuff. I also know what it like to despair over how life is different and how it downright sucks sometimes. Hopefully your grey coloured glassed do not last too long and you can enjoy life again even though it is not the life that you had envisioned for yourself. I have a list of all the things in my life that are good that I reflect over when I am down. What would be on your list?

PS I started the list in a down moment and put a whole lot more things on it when feeling better and had my husband add lots more. He feels that being married to someone with a "perfectly shaped head" should rank as #1. I am not sure of the benefit for me.

Thank you Jules and gabby for your responses. I understand where each of you is coming from. I do feel very lucky i have a supportive husband and there are a small circle of people who “know” and are able to keep a sense of humor about the whole thing. I guess I just don’t want that “look” all the time… I want as normal of a life as possible. I still remember the first person I had to tell about chiari outside my circle. It was in a doctors office, I was having vision issues and she left the room crying and couldn’t look at me! I was smiling and joking and keeping it light and she, a medical nurse was looking at me like a poor pathetic thing… I can’t do that all the time…I am able to work full time people need to rely on me for my knowledge not look at me like a sick person…I do need some sick days, but I make it to most commitments and do most things, yes I sit when I feel dizzy, get a ride when I feel like I can’t drive, have someone cover for me when the headaches make me throw up, but everyone has something. I explained to my kids when they were young that I had a problem with my neck. It explained the dr visits, inability to lift things the mri’s etc. they accepted this easily and would quickly say oh your neck hurts thats ok … I didn’t want them to wonder what was wrong or worry and we had a close relative who died of brain cancer so I felt ever mentioning that it was brain related would be too traumatic…I thought no matter how I reassured them that it was different it wouldn’t be enough to convince them .But it does take a lot out of you to try and"do it all" and 10 years later going to bed at 9:30 is becoming normal to try and keep up with a semi normal normal life. And what is normal anyway… Does anyone have a normal life? But now my kids are young adults they go out,drive,etc and I guess last night,during the argument with my daughter,the argument that I’m sure a million parents have had with their kids, in that moment it really hurt to have her say her curfew was unfair because I probably only have it because I’m in bed so early,and I’m just thinking of myself and who needs all that sleep anyway! it made me feel lazy, ( of course it was said with all the anger a 20 year old can throw at her mom when she wants to win the argument but at that moment I really felt like screaming and confessing that I’m so tired because I have chiari and I still try to be there for everything and be a good mom and it isn’t easy when you feel nauseous and sick most days… Ugh but of course I didn’t do that because that is an awful way to find out your mother has a health problem :frowning: Jules how do you think you would have felt to find out that the health issue really wasn’t a neck issue but chiari after all these years? I worry they will feel I lied to them and not understand that I wanted them to have a childhood without all that worry…I wonder if I should ever tell them … I wonder if they will ever look at me the same… Or if they will become that nurse in the doctors office… Feeling sorry for me and worried about everything I do…

Thing is Kirb22, you are trying to second guess how your children will react. But they are no longer children, they are (as you say) young adults so start treating them like adults and give them the responsibility to understand, responsibility for their own behaviour.

It's not just about understanding their mom's Chiari and all it's implications on your health and wellbeing, it's about developing understanding and empathy for the hundreds, if not thousands, of other people they will come in to contact with throughout their lives. Some will have mental health problems, some may have visible physical deformities or disabilities but the vast majority will have invisible, hidden conditions like your Chiari.

We have over 50,000 members in the Ben's Friends Communties and most of them 'look ok' but they are all sufferers of rare conditions ... take all the folks with autoimmune or sensitising conditions (and I include myself in this group) where debililtating fatigue is part of our everyday lives. I'm grateful if I can make it to 9:30pm and even then it's only with a nap during the day. But I know many people through my work here who rarely make it out of bed at all and struggle with often young children and then there are the grandparents who suddenly find themselves catapulted back in to being primary carers for those grandchildren.

And it's about learning that rules and boundaries exist in all areas of life. When you have the curfew discussion feel welcome to share that my father, if my brother or I had friends round our house, would stand in the hallway at exactly 8:50pm and bellow the announcement "this house closes in 10 minutes and would all guest please leave".

You have given your offspring a childhood without worry but they are no longer children. They are adults. I'm sure you have done an amazing job preparing them for their lives ahead, they will know life isn't always a bed of roses. You've not lied about your neck problem ... you do have a neck problem, a problem where your neck and skull join ... so maybe you could start by saying you'd like to tell them a bit more about it now they are old enough to understand. They may be shocked, there may be tears but most of all there will ultimately be understanding because they love you. And I'd bet it will be liberating for all of you and move your relationships on.

My greatest sadness in losing my mom when I was only 18 (and my father three years later) is that I never really got to know them as people. Adult to adult. When my mom got unwell in July 1981, just like she had many many times before in the preceeding 14 years, I had no idea that this time she might die. I didn't appreciate (then) that at any time she might die. I'm sure my parents thought they were protecting me but actually they robbed me of the chance to 'step up' and be the person they bought me up to be (as opposed to a typical brattish 18 year old!). It breaks my heart that I didn't have just a few more years with her where the adult me could have made her life so much better, more fun, less restrictive. You know, these days, they can operate on babies in the womb or shortly after birth to repair the congenital defect she died from. Ben's Friends even have a community for atrial septal defects ... it makes me smile a little to know that what doctors learned from her heart 35 years ago has saved many, many lives since.

Thanks Jules, I’m sorry about your mom and dad and I’m sure she loved you so much that she wanted to protect you from what she was going through. I have also lost my mom she was a wonderful person. I think no matter when you lose a parent you always wish you could have done or said more . From reading your words I get the impression that you are a caring person who really makes a difference no matter what struggles you face. That honors your parents.You seem to be a very strong person and I really appreciate your insight and advice. Thank you for your honesty you have given me a lot to think about.

Hugs. We understand. Stop pretending be honest about yr symtoms. Your kids need to know . Reminder that chiari is inherited. .