My family that I am close to is constantly giving me unsolicited, unprofessional medical advice. They are constantly telling me to do more, and think positive. I am super sick of feeling like they don't listen to me. I even had a family friend tell me he thinks nothing is wrong with me that a gym membership won't fix. And that he thinks the doctor won't find anything wrong with me. People are assholes. 😯😦😓
Wow that sounds like my family no support just lectures and terrible advice that makes me feel worse it's 3.45 am in the UK am up as always in pain while they are all fast asleep resting, when they wake up they are telling me get up and about!!!! It's fine saying that with your 9 hours sleep they drive me mad!!!!
17 hours wow jealous haha only time I sleep that long is when I put on a fentanyl patch on and my electric blanket at the same time usually have a decent sleep then but not a natural one so don't feel rested :(
When people are close, it is harder for them to accept that there is something seriously and chronically wrong with their loved ones. Denial is easier 😑 . Acceptance may leave them feeling unnecessarily responsible for something they cannot change. It can leave them feeling helpless and overwhelmed, so they try to "fix" the problem or opt to wish it away into fantasy land.
I used to get so mad at my family until I realized this. I still get mad and still feel lonely and unsupported, but Over time I have stopped looking for their sympathy and approval. I stopped looking for their permission to actually be sick or weak. I do what I can and leave what I can't. I take the rest that I need and get the care I can access.
They have learned that I am on my own journey and that they are free to support me through it or not to. I simply will go, with or without them, and it is their choice. I have already made mine. Some support me now, and some don't. Some dismiss my pain, but I then choose to calmly dismiss their dismissal. I can't say it isn't hard, but I can say I feel freer now
@ Moonbows, I feel your pain (in more ways than one) lol My family is small and in the medical profession so constantly giving advice. Always telling me what I should be doing. What makes it worse is that they seem unable to accept my diagnosis or the fact that it can't be 'fix'. Hard to stay positive or stress free when I feel I am constantly having to justify my pain. But being on here and knowing I'm not alone helps heaps.
Africanviolet, I do agree with you on that! My husband is starting to come around... These last few weeks, I haven't been able to do anything because of the Sjogrens Syndrome and Flair that had started up. While he worked hard outside and on my van to fix the AC while I was in bed in pain, feeling worthless. Tonight hubby told me do what you can when you can, I know your not feeling your best and that gave me a little bit of strength to try to get some stuff done, but of course I overdid it again lol but feel accomplished and of course back in pain lol but worth it.
To everyone above 😊 I agree with it all and @africanviolet. I love your positive thinking . The way you choice to accepted what is . Just is . 😊😊 I tried to think that way but than I let myself slip back to the old ways.
Have a great night / morning. Everyone. . ((Gentle hugs)) to all
Remember as long as you are on here . You are never alone. 🤗🤗🤗🤗🤗🤗🤗🤗🤗
Aloha...my story is a bit different...my husband has been there since the beginning of diagnosis and he has always been empathetic...however there were a few things he just didn't understand I think...like I cannot in any way stand the cold...and he used to have the air on at 69...until he started to see the cold messed with me...but even still I don't think he fully understood...that is until about 2 years ago when we were visiting family in Georgia and I also saw a doctor there and that doc explained that cold weather effects us differently and my aunt-in-law also has been diagnosed with fibro anyhoo he really caught on and then before he'd always push to stay out longer and he no longer does that...but I had to tell him I I'm uncapable to do what you think I can do...he used to get frustrated when we lived in France and after being out for 1 or 2 hours I'd have to come home...anyhoo he no longer gets upset as I have talked to him and he comes to every doctor appointment and he literally sees now my limitationa...so we very much operate around how I am feeling and if I say we gotta go...we go now...as far as family is concerned I look at it like this...I'm not about to get myself worked up overy something they choose to stay ignorant on....they know that I struggle...if they wanna support me great if they don't then it's see ya to them...I don't need it...one thing is I have lost friends...they don't understand why I cancel or have to make my schedule around the fibro...and some of those friends are nurses...that has been hard...it's also been hard when I have to use the electric cart at grocery stores...the looks and comments I mean sheesh people really are mean...I finally joined some online fibro groups like this one...that has been a God send....sending gentle hugs (((❤))) and prayers your way
Thank you! I fortunately have a best friend who truly understands, she knew me before my body broke down on me. My boyfriend is also amazingly supportive as well. I am having to move in with my best friend in a few months, and my boyfriend is going to move in as well. There's no way I can live alone, I am a bit of a fall risk, and my friend is out of town a week at a time for work. My boyfriend is moving in so we can be together and so he can basically be my caretaker.
That's great to hear that you will have an awesome support system in place soon!
Yes, family can be the worst... my parents live in a different state actually all my family does. My parents are one of my biggest supporters and my other sister tries, now my my sister who is becoming as nurse well let's just say she thinks she knows it all but had no clue and thinks that I shouldn't be ill like I am and in as much pain as I am, it's irritating to say the least but I still love her so I ignore the comments. Prayers are with you darling.
I've been dealing with chronic pain and now this breast thing and my husband is constantly saying to me is there ever going to be a day that you don't wake up with something wrong with you! It tears me down so much,the emotional pain that comes with chronic pain is the worst part.....none of my family understands. 13 years and one back surgery. Moved to wa. And am having to go thru the dr.,physical therapy then pain management cycle all over again...uhg!