FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I really NEED you to listen to this and just try to understand! 

I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even know that I could have pain in. To feel like someone is grabbing the back of your skull at your neck and literally trying to pull your skull right off of your head. I know there’s NOTHING I can say or do, to tell you how discouraging it is to have doctors tell you that they have “no idea why you’re hurting so bad,” and suggest that you should see a therapist, because obviously, if they don’t see it, it must be just psychological. And while I know your intentions are good and I know that you love me, I CANNOT think of anything to say to help you understand how incredibly hurtful it is to have those that are supposed to love you the most, those shoulders that are supposed to be there for you to lean on, tell you that you’re having a pity party, or  how they “wish you wouldn’t talk about it all the time” (and sometimes it’s not said that nicely either). And for MY KIDS and HUSBAND to have to carry so much on their shoulders and to feel like they have nobody to talk to about it, because everyone’s “tired of hearing about it.” And worse, since it’s genetic, for them to see how you treat me in my pain, and fear that if they’re diagnosed, that you will treat them the same.

You don’t understand, but my brothers and sisters with Chiari do. They understand it all, because they’re living it too. I know you don’t understand the bond that we have, but even though we’ve never met face-to-face, we’ve cried so many tears, and prayed through so many surgeries together; we’ve lost friends together while doctors still try and claim that Chiari can’t kill you (even with death certificates that say Chiari in hand). We’ve lost friends that just couldn’t take the pain anymore, and we cry together because we know that those thoughts have been our own and we struggle to find a way to keep pressing on, together! I know you don’t understand the bond, but it’s real.

I’m not saying all this to make you feel bad, God forbid you feel bad, I’m saying this because I STILL NEED YOU. You weren’t put in my life by mistake and what I’m going through physically and mentally is frightening and heart-breaking and I need you here by my side. You think you don’t have time to see me through all these surgeries and diagnoses, I don’t either. There’s so much more that I wanted to do with my life and now I just want to hold my head up without pain. I NEED you to change your heart towards me and all that I’m going through. I need you to call me, and just love on me. I need you to remind me of all that I am, despite my pain – that I’m stronger than I often feel like I am. I need you to remind me that there is still value to me still being here on earth. Because in those dark moments, when I look at all I’ve lost and everything that my family has lost through this fight, I need to hear it in someone’s voice besides my own. I need you to remind me how important it is that I fight this vigilantly, so that if God forbid one of my kids have to fight this fight, I will be the best possible advocate I can be for them. They’ve missed out on so much with me being sick. And should my fight on earth come to an end, I need you to stick to them like glue, and help them know how fantastic they are and that they’re not alone. Remind them that their stronger than they think, just like their warrior mom! Remind them that they have a purpose and a destiny to fulfill on earth, and to not to let anything stand in the way of that. If they get knocked down, pull them up again, every single time! Don’t worry, I’m not planning on going anywhere, this isn’t a suicide note or anything. I still have every intention of changing this fight of mine and winning it. But it’s hard sometimes and I really need you to fully understand how much I NEED YOU! Help me win this!

***Michelle originally wrote this on Facebook in 2016 and the response from the Chiari community was astounding. What was astounding was not that so many liked it, but that so many Chiarians resonated with the heartbreak of it. It has been slightly edited for publishing. It was originally written with explicit language, that we at Chiari Bridges felt was a “most accurate” representation of the raw emotions that so many of us feel when we encounter these types of struggles in our family dynamics. However, this “clean” version is being created, for those to that are not comfortable sharing content with “strong language,” but still relate to the article and wish to share it.

The original (explicit version) of this article.