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Family Support... I need some help please!
32 Replies
tcmby - March 20

I am having a really hard time with my family lately. They get pissed off when I don't answer my phone (cause I am in bed resting w/ ringer off) so I am constantly defending myself about how I spend my time. I try to hide how late I will sleep in... coz then comes more disapproval & judgement about being lazy or depressed or not helping myself or whatever.... I just feel so crappy always having to defend myself about feeling sick, or having to lie to make it seem 'not that bad' coz everyone is so tired of hearing how bad it is anyway. this is causing major problems with my family. Its a rock and a hard place. They dont want to hear about "my illness" anymore, yet they get mad when I am not around. So how can you explain yourself when they dont want to hear it and basically want you to just "snap out of it" and toughen up? Does anyone else deal with this? They do not get how BAD I feel most days. I dont even want to try to tell them anymore.... People just don't get it and & can be so critical, impatient & freaking mean! I am so sick of having to hide things & defend myself constantly. It creates more stress & just makes everything worse. I feel like I am a grown woman and living on my own & I shouldn't have to explain myself or what I do all the time. Its my life and I'm doing my best.... for God's sake! I am tired of this. can anyone else here relate? I don't know what to do to get them to back off and let me be. I am so sick of defending myself!


Fantod - March 20

Hello tcmby - I was sorry to read about your situation. Have you suggested that your family take a look at this website? Would your doctor be willing to have a meeting with them to discuss your situation? I can relate as I have a family member who alternates between complete denial or wants to send me to some clinic to get "cured" in another part of the world. Denial is a hard thing to deal with. As hard as it is, you just have to stand your ground. You know your limits. If your family can not be supportive perhaps you need to not speak to any of them until they agree to attend a meeting with a doctor, counselor or a local FMS support group. Stress plays a factor in FMS and they are surely adding to yours. In a nutshell, I think that they are frightened by the changes they see from FMS. Instead of being helpful they freak out instead. I think knowledge is power. Finding a way to educate them may be the key. I hope this response is of some use to you.


JJ1 - March 20

tcmby - I also try to downplay my symptoms to my family. Don't want to be complaining all of the time. Overall, they have been pretty supportive, but I don't think I have as severe of a case as you. I was most fatigued when I had anemia and I think they were becoming a little frustrated with me at that time, but when I discovered it was anemia, I got all sorts of attention and compasion -- funny how it is that people can understand anemia but when you mention fibromyalgia, they don't know what to think.



Connie - March 20

As the others have said, you are not alone. Positive self talk helps me deal with this type of situation. After dealing with fibro for many years, I had an interesting thing happen. My daughter, who is 27, sent me flowers at work and made a surprise six hour drive to my office about two years ago. She wanted me to know that her assistant had shared how difficult the pain and fatigue were. This was the first time someone else had talked to my daughter about fibromyalgia.My daughter finally "got" it. I didn't know that my daughter thought I was being lazy all those years, and with a full time job! My daughter felt so very bad for her behavior as a teenager and young adult. She still catches herself from time to time, but has been much more supportive. I don't talk about fibro with anyone except my husband unless necessary because it really doesn't make things better or easier. People understand a bad back.They don't have the same patience or understanding for fibro, and I'm not sure I really want to dwell on it with them anyway. I don't make excuses. I'm sorry you have to deal with this and hope you are able to be good to yourself in spite of things.


teresat - March 21

I am very lucky!! My family is very supportive, although I don't believe they fully understand. I don't have an illness that they can relate to, but they try! I also always take phone calls from the family! Mom calls me everyday, several times a day! She just wants to know how I am!! If I were to stop answering her calls, she would become frustrated with me. I set my phone to let the answering machine pick up. Then I can screen my calls & only answer the calls I want! I also have a cordless, so I can take it with me!! That way I don't have to get out of bed or off the couch if I am resting. I guess that what I am saying is, the MORE I speak with my family the MORE they try to understand!


Amyloo - March 21

Hi tcmby-here's how I would respond if someone complained they couldn't reach me:"Oh, I must have been resting. What did you need?" Or "I must have been out; how have you been?" If someone tries to get you to engage in a conversation regarding your fibro, you really don't have to respond. If they want to offer advise or judgement on what they think you should or should not be doing, simply respond with "that's a thought" or "that's an idea" and then ask them "so what's new with you?" Empower yourself with the option to either discuss or not. Just because someone says something doesn't mean you have to defend or even respond. Hope this helps.


Adaire - March 22

Teresa, when someone reaches out asking for support, bragging about how "Lucky!!!" YOU are doesn't really help you know? You and tcmby have locked horns out here in the past. Your reply was more antagonistic than helpful. Why don't you honor her request and kindly leave her posts alone (as I've read she has asked you to do many times in the past)? You may think its clever, but really... its not very nice.


Adaire - March 22

Tcmby, I hope you are feeling a bit better. Its hard for family to understand, especially if they are in great physical health themselves. I miss phonecalls too. Having a cordless phone with us while we are trying to sleep kinda defeats the purpose of resting! My phone rings constantly so I turn the ringer off too. Just let them know that you do appreciate the care and concern, but don't feel bad or that its all your fault when they don't understand or if you don't "talk to them all the time". Everyone is different. Just do your best and take care of you.


tcmby - March 22

thanks for all the great advice you guys. i had a good talk with the fam this week... hopefully that will help going forward. adaire.... thanx for sticking up for me but i try to ignore it at this point. i have asked her to leave me alone many times but anytime i post she seems to feel the need to 'make a statement.' i just laugh at this point, its pretty predictable.... JJ are you feeling much better now that your anemia is being treated?


Jean Taylor - March 22

I so hear you: No one gets it! I wish they could spend 5 minutes in my body when I'm having a bad flare (one today because I dared go to Wal-mart and stock-up yesterday!). I've tried printing out every legitimate article on it and showing them - but to no avail. My husband understands I hurt - but he gets tired of carrying so much burden because I am so dysfunctional. I can't blame him but then I look in reverse and know I've had to take care of him at times and not gotten "%itchy" over it. I don't know what the answer is - except a cure. Geez - PRAY everyone!!!


teresat - March 22

Adair, I simply said what I KNOW to be TRUE! You can't ignore your family! You make time for your family & you are a better person for it. Kind of like how you ignore personal attacks & you are a better person for it!


Adaire - March 22

Teresa, my point was that this gal has asked you to leave her alone! If you guys can't stand each other, why do you keep replying to her posts? When someone is asking for help, do you think its very compassionate to go on and on about how great YOUR situation is? Kind of like smearing it someone's face hey? Everyone else posted suggestions for her, you gush about yourself. Do you think your reply was helpful to her? That's all I'm saying. Not everyone has an ideal family situation! Anyway, after what I've read from/about you on this forum.... you can stay away from my posts as well thanks.


Iori - March 23

oh boy. i also noticed this. she does tend to follow tcmby's posts around making little digs at her. try to keep the peace & just ignore it. its a whole lot better than it used to be at least... tcmby i downplay my stuff to my family too. i'm glad that you guys had a talk, maybe now they will lay off a bit & be more understanding. spending time with your family doesn't make you a "better person" either, that is unfair. not everyone has a perfect family relationship & that's ok. sometimes even when you do your best its still not enough for some. all we can do is try ;)


teresat - March 23

Adair, first of all I was replying to A POST (I posted to many that day)! Secondly, I said what works for ME(suggestions for people to try)! Thirdly, an open forum is just THAT,OPEN to ALL, (to share, suggest, comfort or respond) I was not being mean or attacking anyone! Can you say the same? I will post to any post I feel like! Ignore me IF YOU LIKE ( I have already posted to some of your posts oops)!!!


Iori - March 23

grow up teresa.


teresat - March 23

PS.. Lori & Adaire, re-read my post. I wasn't making any DIGS, nor was GLOATING !!!


Iori - March 23

grow up!



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