I am visiting my sister for holidays… After along day walking, I was complaining alot because of terrible leg and foot pain and exhaustion with no bench to sit on while waiting for a bus with her. She barked at me and said I should just stay home, stop complaining and making everyone else miserable and stop being an imposition and burden on everyone. It was as devastating to me as having fibro. I now know not to count on even minor emotional support from my only family. I don’t feel I ever want visit her again. I told her thank goodness not everyone feels that way toward sick people but the damage was done I felt awful and embarrassed and like a burden
With no real mercy from family or this disease, I am in alot of pain this holiday. I needed a safe place to be to get through this visit. Feeling pretty sad about all this and alone…
I'm so sorry you had such a terrible experience. This site is a safe place where we all know that fibro is NO JOKE and you'll receive a lot of support. I can't walk too far, too fast or too long a time because of the pain it inflicts. I'm learning that slowing down to a pace I can handle is key. If friends/family want to do something, I tell them upfront what I can or cannot do. That may mean leaving from a planned activity earlier than others. So be it. If I get questioned about leaving early or coming later than others to an event, I simply say, " I'm hurting and need the rest". That's it. If they have something snarky to say, that's their business-try to tune that garbage out. You are no burden! You may not be able to do what you once did, but now you have the opportunity to find new ways to contribute. Don't give up on yourself!
Awww that is sad that your sister has reacted in this way. I would go mad if this happened to me especially at christmas time and everything. You tried your hardest to join in with the activities too.
I've had a lot of confrontations with people when they have made unhelpful comments like that. Sometimes thats the only way you can get your point across for them to understand, but they should understand anyway.
Thankfully you have a lot of friends on here for support. We totally get how you feel and go through the same pains and stress too so its always good to share your feelings than bottle it up.
I'm betting your sister will apologise soon when she realises how hurtful she was.
Try not to let it get tot you too much. Be around positive and supportive people is the best thing you can do.
Thanks for support everyone. It’s so difficult just to put mental energy into getting through the fibro pain. I thought I had my family to lean on and share the load… She hasn’t apologized for her words. I can see now my sister doesn’t want to be supportive and that is a hurting thing. Glad I have boards to come to for this visit.
IM SORRY SHE COULDNT UNDERSTAND IF PEOPLE ATENT AROUND YOU A LOT LIKE FAMILY YOU DONT SEE EVERY DSY/WEEK.THEY JUST DONT UNDRRSTAND.MY 2 SISTERS LIVE IN THE DES MOINES IOWA AREA.ITS A 3 1/2 HOUR DRIVE. SHE WAS HOSTING THIS YEAR.ALL 3 FAMILY MEMBERS WANTED TO KNOW IF I WAS ATTENDING.I SAJD I DONT THINK SO IM VERY STIFF BECAUSE OF THE FIBRO.ID BERN DOINV ALL EXERCISE EXCEPT FIR THE AQYA ONES.THE HISPITAL POOL HAS CONSISTAT 85-90 DEGREE WATER.THE PHYSICAL THERAPYS OVER THE INSURANCES WONT PAY.IM GETTING A YMCA MEMVERSHIP BUT I HAVE TO WAIT UNTIL THANKSGIVING.I WOULD BE AFRAID TO COME ENJOY. THE TIME TOGETHER BUT GET HOME AND NOT BE ABLE TO TAKE CARE OF MYSELF AND MY DOG HEIDI.THEY SAID WHY CANT YOU COME AND DO YOUR EXERCJSES AFTER THANKSGIVING.I SAKD IF I COME HOME CANT TAKE CARE OF MYSELF/HEIDI AND YOU INSISTED I COME. YOURE NOT GOING TO COME AND TAKE CARE OF ME.I SAID IM IN MY BODY AND YOURE NOT IF YOU CANT UNDERSTAND THEN THATS YOURE PROBLEM.I CANT TSKE THE RISK.ALL 3 OF THEM OKAY.)
unfortunately most people have no idea what life is like living with fibro. We each have to make our own safe place. I try my best not to complain about the pain and tiredness to regular people as I know they will never understand. I find for me the best thing to do is plan ahead and limit my activities to what I know I can do and then rest when I need too. I know it is hard but we all have to be assertive about out needs in a non complaining way.
Thanks everyone. 
So glad to have you in my life. I don’t have a working laptop so I havent been able to get here much… I am on hotel laptop for now. I really miss you all. Great group of people.
I’m so sorry they don’t understand.
If they felt 1/4 of what we feel daily, things like that wouldn’t be said.
Know you aren’t alone and we do understand.
Oh god, ur story just broke my heart! What a heartless thing for ur sister to say. As everyone else has replied, no one can begin to understand this rediculous disease. I would not wish it on my worst enemy!! No human should have to feel this pain, but even more no one should have to live with others not understanding. My family is not very supportive about the fibro either. When I had Cancer few yrs ago they were completely supportive! Because Doctors are still not supportive and people’s lack of belief in F, this will only continue. We’d b better off with a DX of MS, or Lupus or other. People completely support that! My son is very much like ur sister. He thinks I just don’t do enough! I know in my heart tho, I’m the toughest person I know. I just try to remind myself of that all the time. Have found that to b my best method of coping with non supporters. I just quit talking to them about it, that’s what they want u to do u know. Just make up other excuses if u can when ur put into those type situations. I’ll just say things like, “oh, I just didn’t sleep much last nite, or I’ve even gone so far as to say, I’ve hit darn urinary infection, zapped my energy right now”. I know that sounds crazy, but trust me, they’ll support u over those things. I never let on that I’m suffering from F! It took me many yrs before I figured this out, but it has improved relations with my family. It’s hard I know, u just want people to understand, but I know that’s not going to happen unless they r stricken with it. I truly blame doctors, pain clinics, insurance companies, and even our government for most of the lack of support. Until we can get their cooperation and support we can’t expect our families to b on board. Sry I’m rambling, but boy would I like to talk to your sister! No sister should act that way!!! She has more of a disease than u do…it’s called stupidity! Some day she’ll be sorry for her lack of compassion. Just remind yourself constantly, you’re much tougher than any of those non-supporters, because u bear the pain every second of your life…and spend time sharing ur compassion for someone who deserves it…that will help you both! Soft hugs for you my dear, dear partner in pain.
BB, my psychologist would say that your sister has no "other person perspective". I would agree. Lots of people don't. Some have empathy all the time, some never and some have it some of the time. It stinks! This whole thing stinks! I hope you can get past feeling embarrassed and burdensome. You are not a burden.
We learn that our safe place is our home, so we only venture out when we feel really good or are going to a really safe place where we know the people won't judge us. I struggle so much with this. I am not very good at being home all the time. Visiting with your sister sounds like it was a great idea. I'm sorry it turned out this way for you. I have family that doesn't understand too. Although the urge to see them is there, I try to stay away because it's like torture. You know?
Thanks for sharing BB. You just do what you need to to feel better. You don't have to go visit her any time soon. Put it behind you now.
Love and hugs,
Kitty
ur not alone hun! *hugs* its hard for our loved ones or even people we dont know to understand what we go through bc they haven't gone through it. they think it's a joke and we complain just to complain or say we're in pain when we aren't...and most of the people who dont understand think it's fake. thats the only thing i can explain to you as to why she would be like that. my sister doesn't believe me or rolls her eyes or whatever and i just tell her to wait bc one day she will be in pain with something and she might understand the back pain i have (from a car accident i was in and from the fibro). but the more i think about it, she wont ever understand. the only ones who will understand are us (meaning the ones with fibro.) I will pray for u honey and pray that she finds it in her heart to understand and apologize. *hugs*