I sent the Chronic Pain Letter to my family. I actually read the letter to my significant other hoping they would have a better understanding of how I feel day to day. He just looked at me with a blank stare. My family clearly has no idea of what it’s like living with chronic pain. I’m scheduled to see a pain specialist on April 7th. Hopefully he will help me.
As for my family, it saddens me to know they will never clearly understand my pain.
Never say never, rissap. Sometimes there is a "delayed effect" to this kind of education. I hope this will be the case for your family. Wishing you better days soon.
I never wrote a letter to my family. They just watched me recover surgery after surgery. I hoped for someone to understand but never expected. My mother always did somehow. She now has worsening spinal issues and can completely understand. She’s going in for her first surgery in 2 weeks and we both understand how she feels. I wouldn’t wish this pain on anyone, but it is refreshing to have someone by your side that just knows. I hope you find your someone.
I’m not sure anyone can fully understand it unless they have lived it. However, it’s not too much to ask for a little empathy. One does not have to understand the level of pain but one can still assist and comfort someone without full understanding. Hopefully your family and friends provide that for you!
I’m sorry to hear that. I agree with dancermom though, there can be a delayed effect when hearing that kind of news. Some people in my family didn’t understand it at first, & others thought I was just trying to hide drug use because of the past actions of some other family members. The ones I’m really close to either understood, or tried to, & as for the the others if they choose not to try to get to know more about it, I cannot force them. I hope you know that you have support on here & you can always message me personally if you want to talk. I dealt with the chronic pain for 17 years (I’m 28) & just had decomp & fusion surgery on 1-26-15, & am still dealing with pain & other issues. You’re not alone!
Also, I recommend seeing a neurologist who specializes in CM. In my opinion, a neurologist will help you more than a pain specialist. That’s not to say a pain specialist won’t help, I just want you to to get as much help as possible.
Oh now that just bites. So sorry to hear your significant other isn't digging it. :-( I know a little how it feels although mien is not my husband. It's actually my mother in law.... she says things that make it sound like i am incapable of doing anything and that i would just rather be lazy around the house all day. For example.... the other day they stopped by unexpectedly and our house was a little messy since i have had terrible back pain lately and it hurts to do anything other than lay flat or to walk around. She told me "If you need help cleaning, let me know. I can come over and help clean. I know he said he's a little overwhelmed." When he was actually talking about his pile of mail that she had just asked about that was on the floor. She turns everything into something negative (and bigger than it actually is) and mentions it to me as if its my job to take care of everything but i'm too lazy to.
My advice to you is just let that letter sit out somewhere in his view that he won't move it but will see it every day. It might help to get him to come around. I have a notebook that i use when i am having a down or bad day and i need to vent. My husband knows that he can read it at any time. Especially if he sees that i have been using it every day for a couple days. Adn it has helped him to understand how bad i am feeling. I use it kind of like a diary but about how i feel. I write what sets it off, how he reacted, what he said, what he did, what i did and said, and how i felt afterwards. It really opened his eyes to how i was feeling about a lot of stuff. He know lets me rest, even yells at me for shoveling the walk! But i would seriously think about trying something like that. My notebook was around before we found out about my chiari but because of it, he has been there for me the whole way with the Chiari. I hope your guy comes around soon. If the rest of your family still won't, just bluntly tell them that if they don't care to even look it up and read about it, then to not bother saying anything about it or to put you down about it. Remind them that you are the one dealing with it and you dont' have to make things worse for yourself just to please them. YOUR health comes first for you.... before them. Family or not.. if you don't first care for yourself, how can you really care about others? :-) good luck!
Thanks to all for your prayers and understanding. Having increased pain on the right side of my neck and behind my ear. Am being scheduled for another MRI, hoping there is no infection or problems with my Dura-Patch. Also had a colonoscopy and EDG. Diagnosed with lymphocytes colitis and an ulcer. Ain’t life grand? At this point, all I can do is laugh and pray. Keep praying and keep the faith my Chiari friends.
Okay, I am just sharing not complaining. I get a lot of "tough" love in my life. I hear it all from my husband, I am lazy b*tch, bad mom, spoiled rotten, fake it all...house is a mess (especially after those few days when even going upstairs seem to be like a hard thing to do). He likes to say it especially when I am in pain, when I am sick, when I can't drive, when I ask to be left alone. Imagine to hear it all while in pain if you are not lazy, if you are a good mom, if you force yourself get up and keep going and do as much as you can pain or not, if you were stoically taking pain &all symptoms without medication and going to Drs for 14 years (it is only last year I am finally got few meds prescribed). Run from him? BUT If God wanted me to have Chiari, my hubby could be just a cream on top! Lol. How can I laugh about it? Because his insults are so beyond reasonable I can't take them seriously. And, reading about my hubby, I am sure any of you can appreciate the one that stands by you either he reads your letter or not:).
Hello
I have a son who goes through the same thing u are. When he was first diagnosed with Chiari he tried to explain the family members, doctors and such, how much pain he is in. Your right I think most people cannot understand what its like to be in constant pain. It may ebb and flow but its still there. I wish I knew the answer but the one thing is u need to try to explain it as best u can. The people that love u need to become more understanding. My son is now 30 and has a family of his own. But I still worry and probably always will. I am very glad for the good days, when he wants to talk and play with his boys. I is sad they won't really understand but u can teach them. I wish u luck and many pain free days.
There are so many people that will NEVER understand what a chiarian goes through. Some people are too self absorbed, others lack empathy, and some just don't care. There is always hope that your family, friends, and others close to you may get it some day.
If CM were cancer, folks would "get" it. I try to tell as many people as possible. Not to get sympathy - but to educate and spread the word. I have heard too many times..."you had surgery, you are cured." RIGHT, keep telling me that , I might believe it - NOT! I pray that society begins to understand at least some of what we have endured, continue to endure, and what we potentially face for the rest of our lives.
Be proud that you tried to reach those you care about. Pray for them. Love them and yourself. Know that you are not alone - EVER.
-M