I frequently find myself either bitterly acting out or saying this to those around me. Apologizing to those whose lives are affected by my illness, as though it is something I did or like or want or don't suffer horribly from myself. As hard as Fibromyalgia is to manage, the guilt on top of everything else is ridiculous! Do other chronic illness sufferers feel the same way or is this particular to our condition because science and medicine are still so clueless about it? Because there is a massive "blame the patient" stigma attached to Fibromyalgia? I honestly don't know. All I know is that when it comes time to take care of myself because I am in a flare or have not slept or am hurting so bad I simply cannot get up off the sofa I feel guilty. Guilt tinged with absurd anger, and usually jump up to try to perform whatever task is in question. Many 'o many a time I have picked a fight with my husband simply by projecting this onto him. I take my own disappointment in myself, my own frustration at my limitations and get mad at him for treating me like I am letting him down. Poor guy! Still wonder why he puts up with me... He will just stand there helpless as I freak out and slam the dishes out of the dishwasher, into the cupboard or begrudgingly start throwing laundry around, stuffing it into the washer. Sometimes he gets mad back, if he is short tempered already, telling me this is my issue, not his. Other times he shows me compassion and tries to get me to be nicer to myself. Either way it sure sucks to be him right then and there!
Why is it so hard to show myself kindness and self-respect? I know Fibromyalgia is "not in my head", yet my actions sing a different tune! I know how to take care of myself to minimize the symptoms I suffer from on a daily basis, yet feel it frivolous to do so. One of the biggest personality flaws that reared its very ugly head when I first became so ill with CFS & Fibromyalgia was the need for approval to be sick. I needed it everywhere, from everyone! Mom, dad, husband, friends, coworkers, bosses...not to mention doctors and therapists! It was as though if everyone would get together and collectively say "Poor Leah, she is so sick!" I had the permission I was looking for to take care of myself. But there was NO ONE lining up to do that. No one knew what was wrong with me, it was living hell finding a doctor to even take me seriously, let alone people that I crossed paths with on the streets of life.
The emotional growth I went through on this 1 issue alone was massive. I had to really get to the root of why it was so important for everyone to "agree" that I was truly ill. Did this stem from a childhood need for acceptance? Did I need permission to lay down my "type A" evil ways and just be? Was I completely lacking the self-esteem necessary to be nice to myself? All I know is that accepting that Fibromyalgia and Leah had to come to terms with each other was something that happened bit by bit, little by little, inch by inch. I slowly peeled back the layers of emotional weakness that needed so bad and realized that if I was to survive this monstrosity it was only going to happen because it was on my terms. Getting to the point where the opinions and judgment of others regarding my methods of managing myself were of little importance to me took years. It is still something I struggle with, but I can sure say that my need for approval has gone from Amethyst to Lilac and that makes it much easier to take care of me.
Thanks for joining,
Leah
Leah, I have gone through a similar course. It was so hurtful when even my mother had no empathy for me. That's when I went silent and didn't try to explain it to anyone. But, the biggest hurdle was me......allowing myself to cut back on things people expected of me, allowing myself to relax and restore. I am a pleaser and this is not good. I am still a work in progress even after all of these years but I'm definetly being kinder to myself and don't care what anyone else thinks! But, it has taken YEARS.
ReplyDeleteTHIS MADE ME CRY BECAUSE YOU WRITE ABOUT HOW SO MANY OF US FEEL AND ARE NOT ABLE TO EXPRESS THE EMOTIONS THAT WE GO THROUGH EVERYDAY.
ReplyDeleteWow! Have you been reading my mind? You have hit the nail on the head as to how I am feeling most of the time! I don't know how long it will take for me to get to the point where all of the guilt goes away. Thanks for sharing what all of us are thinking.
ReplyDeleteLeah I cannot tell you how much I love the things you are writing it is as if you are taking thoughts out of my own head and putting them on paper. =)lol or in your blog I should say.
ReplyDeleteYour blog is inspiring, keep it up!!!
Thanks so much for sharing.
Leah, once again your writings have been like reading my on words poured from my soul. As I sit here now a full blown Amethyst drowning in guilt that I did not go to my grandmother's (who has less than 6 months to live due to cancer) 90th birthday celebration at her church, my husband and 8 year old son went, but here I sit in pain & guilt searching the internet for something to help me in this state that I am in, & once again it is as God sent me your word to comfort my guilt of disappointing and letting down so many people I care about. Thank You so much for taking the loneliness of the feeling away, it is more comfort than you can imagine.
ReplyDeleteI understand totally i find myself lately apologising for saying i feel ill again to a few around me im able to talk too, i think also i hid alot before but now i cant hide it anymore so im moaning (if thats the right word!) more about how ill i feel even tho somedays i wanna scream arrrrggghhhhhh your so clever Leah and able to voice alot about what i am thinking or trying to explain to people who are interested (2 in total) xxxx
ReplyDeleteYep. I can sure relate to the guilt and self-recriminations. However, since I turned 50 last year I have found it 'easier to be easier' on myself. I read somewhere that when we are at our worst is when we should treat ourselves like we would treat a good friend.
ReplyDeleteWow, you really nailed it! When I became sick 4 years ago, my mother and I were in disagreement over a stupid argument. She thought she was right and I believed I was right. We had previously been really close. Instead of working out the problem and getting past it, my fibromyalgia made me very angry and depressed so I refused to give in (like I always had). She basically said the fibromyalgia was all in my head. As time went on, I lost more and more of my family as they all drifted to my mother's side. She has them all convinced I am a hypochondriac druggie. NO ONE would validate my illness or my feelings. All I have left now is my husband, one uncle, and one best friend who has always stuck by me. I tell myself I am better off without them but it certainly hurts every birthday and holiday.
ReplyDeleteLeah,
ReplyDeleteI feel so guilty as well.......thanks for writing! It really does help other people realize they are not alone and are not "crazy"!! i have been having severe depression lately....alot of it is guilt for feeling like a horrible wife and mother, but alot is anger for feeling so crappy all the time. Thanks for being there!
Terri
Oh we are SO not all alone and The Fibromyalgia Crusade is going to propel us forward as "legitimately sick". One day all those that doubted us AND the medical community will be on their knees apologizing because they have finally figured out what is wrong with us. Till then we have each other!
ReplyDeleteLeah
what a journey we take to acceptance..... marty rollo
ReplyDeletereading this entry, I swear I could have written it myself. In fact, this morning I wrote about feeling guilty about missing out on things with my kids.
ReplyDeleteThe description on the relationship that has de-volved... not evolved between myself and my spouse...well I don't need to say any more, you understand. It was so nice to see someone else experiences what has been happening to me. what a relief