My family, or what's left of it, a brother and a cousin were not really involved in my illness. My cousin started out being really involved, but she was not with me, and would try to comprehend from her house. It turned into her trying to control me, not validating anything I was experiencing, and saying insulting and belittling things to me. I pushed her away to protect myself, and told her if she was going to treat me that way she could not call me. So it continued through texts and emails. Her two daughters got involved and literally ganged up on me telling me how ungrateful I've been, and hurting their mother. Not only was I sick as all hell, but I felt like I had to justify my actions. They did not look up anything about my illness to learn what I was going through, instead insisting I educate them since they were too busy.
This has continued back and forth for the 6 mos prior to my surgery, after my surgery I went home alone, and they simply disappeared. I had surgery so in a few weeks I'll be better in their minds. The stress of this has significantly affected my recovery. Each email is like a car accident that I can't look away from, and I know I should. My heart pounds, I'm waking up at night going over what I said or what they said. I'm mourning the loss of my family as they blame me for the problem.
It's simply horrible that it got to this point, and I feel for anyone else that may be experiencing this. We have enough on our plates, and without the support of our families the burden can be overwhelming. My friends are a God send, as are places such as this.
I am so sorry that your family is not educated in Chiari...if they took the time to do so..maybe they would 'get it'! That being said, you cannot change others....you have to say away from the negative crap they are telling you and stick very close to the people who really care and understand.
That old saying about being able to pick your nose, oops, friends, but not your family? True but to an extent. I have always found it hilarious, in an ironic way, that it is ok to kick an abusive spouse/partner to the curb if the relationship is toxic but you're questioned if it's "family". "F" that. Seriously. I have GREAT siblings but my parents are completely toxic and always have been, it has only gotten worse over the years. I finally cut 'em loose after an incident at a family funeral 6 years ago, best move I EVER made. The sense of freedom was intoxicating. No more taking care of them, taking their verbal BS, giving away $$ I didn't have as a single parent cause, God FORBID they went without. After all, they had children to take of them, right? Not a single one of their children speaks to them any more. I was the only one even in the same STATE as them. After we "broke up", lol, I was completely alone with a child. I didn't care, I was always the one taking care of my household and theirs, so it actually a relief just to try to take care of my own house. :) SO, I made a new family, one I wanted. I have a wonderful guy, between us we have 2 great kids, and live a very quiet, UNEVENTFUL life in a tiny rural town. grin. Life is good. Your life will be too, give it time. Ending a bad relationship is like any physical wound you have, it hurts, it itches and we pick at it, then we finally leave it alone and it scars over. Leaves a mark but doesn't hurt anymore. Promise.
I am so sorry you are going through this. Talk about adding insult to injury! It's not right, it's not okay and it's not humane. People that help and keep score only to throw it up and hold it against you later are dispicable. My family has flown the coup as far as helping me and understanding and I know it's heartbreaking. You have so much inner strength and compassion for other people you deserve to have that givin back to you. You help out so many people here with your words of wisdom and kindness. I want to tell you I appreciate you and I value your insight. I hope and pray things get better and start turning around for you. In the mean time we are here for you. {{{hug}}}
So sorry that you are going through so much stress and grief with your family. It's true, you will be better off if you can remove yourself from all of that negativity. I have done so with some of mine. We are too sick and tired and stressed to deal with that too. Focus on your loved ones, your family of friends and supporters, there physical with you and us, here too. This too will pass, it will get better:) (((((HUGS))))) You will be very close in my thoughts and prayers, today and every day,
Oh my gosh...let me tell ya, girl...my daughter has been sick as heck for 18 months. It's been a nightmare for us and esp for her. I expected most of her 13 yr old friends wouldn't get it, but grandparents?! School admin?! Other "adults" in the fam?! They are constantly screaming "me, me, me!"
I sometimes think it's partly to do with being so nice over the years and just putting up with the me, me, me stuff. As for school: she is the perfect student. We've set the bar so high and catered to these people for way too long.
So, we cut them out or handle them firmly as self-defense. Now we're left with so little family and one big mess. Yes, we're justified and they're nuts but it does not ease the pain especially when you've tried so long to be all about family and love.
I read a book recently called "Being Wrong: Adventures in the Margin of Error." Oddly enough, it helped me gain a bit of humility and understand others a little more. It's no self help read. It is solely research and observations on being wrong.
I'm sorry you are going through such a hard time and your family is not supportive. I honestly think I would block their numbers so they couldn't text and mark their email addresses as spam so they'd go straight to the junk box. Sadly if people are too lazy to even try to educate themselves on your illness there really isn't anything you can say or do that will make them understand. Use that energy towards healing instead! :)
Thought of something else...when I am tempted to call, text, email, ask family to come and visit (why?!?! am I crazy?!?!?), I STOP and tell myself that I do not need to pursue people who aren't kind to me. Then, I quickly busy myself with something to keep me from trying to (fruitlessly) fix everything. Often, I'll call my friend with the most personal drama and just let her talk away. By the time that's done, I do not feel the need to call the fam.
For goodness sakes. People can be terribly selfish sometimes. My advice is to send one last email to them stating your health is more important to you than arguing with family right now, and you'll contact them again when you're feeling stronger. Then delete all further emails and texts. I know it's hard not to get involved but every response feeds their desire for attention and drama. Just keep in mind you've got a "family" here who cares about your well-being.
Some people abuse the ability to chew solid food... It would be nice if that was temporarily taken away from them for a short time! What goes around comes around!
Why someone would be so shitty during a time like that is beyond me. I get the fact that no one can possibly comprehend what WE go through in a day. I know my family attempts to but they will truly never fully understand.