First I want to say that, being recently diagnosed, I'm so glad to have found this message board. I just found it today and it has already helped me so much!
I guess I've had fibromyalgia for a long time but I wasn't diagnosed until recently when it has become constant and debilitating. Along with dealing with the knowledge that I'm going to have to learn to cope with this forever, the increased pain and other symptoms and the decreased ability to just "live" and enjoy life because I can no longer push through the symptoms and do the activities of a "normal" person I am also dealing with skeptical family members.
My 85 y/o mother is in great health and she is very judgmental. She recently called me "pathetic" and she may as well have stuck a knife through my heart. She's constantly telling me I would feel "like a new person" if I'd "exercise and eat right". I try to explain to her that I'm doing my best in trial and error trying to figure out what will work best for me. She successfully adds guilt on top of my existing struggles. I've tried to explain it to her but she either doesn't want to or is incapable of understanding.
I have a 26 y/o daughter who is married and pregnant with my second grandchild. My other grandchild is a very active almost 5 y/o who is having trouble understanding why G-Ma doesn't play like she used to. My 26 y/o is sympathetic a lot of the time but tonight my youngest daughter told me that my 26 y/o told her that my tests came back from the Dr. and there is nothing wrong with me. Sometimes she becomes very agitated with me when I try to explain to her how I'm feeling and, more importantly, why.
Most frustrating of all I have a 15 y/o daughter who lives at home with me. My new job has required me to work a lot of overtime which takes everything I have in me to do and leaves me with little to nothing left but I have no choice. I was unemployed for almost a year and I have to keep this job. My daughter gets resentful that I can't run around doing things with her that she wants to do. Today I asked her to help me around the house and told her that I'm not feeling good and she said "You NEVER feel good so it's always the same thing!" As a single parent I like to think that I do a lot for and with my daughter. She also said "There's nothing wrong with you, you're just lazy and using this as an excuse." This both hurt and infuriated me... and lead me to this message board in search of help and support.
Can anyone provide me with any advise and resources on how to educate my family on fibromyalgia? I really want them to understand my limitations and not take it personal because I can't do the things I used to do. I don't want them to view me as lazy or crazy. I want them to know that my pain and other symptoms are real not imagined and their understanding and support are extremely important to my emotional and perhaps even my physical well-being. Any advise and/or resources are greatly appreciated!
The following user gives a hug of support to Poetnmotion: chicknlittle (06-04-2012)
Hi welcome to the site. Sadly this is a problem we all face to some extent. Other people just do not get it, I now realise that it is their problem. I got fed up explaining my condition to some family members and friends and having to listen to their advice, well meaning but useless. All you can do is sit them down tell them how you feel, ask them to look it up on the internet and then come back and talk to you.
As for your 15 year old, she is just being a teenager, try not to take it to much to heart, if it was not your fibro she was complaining about it would probably be something else.
Feel free to vent here, I am only on this board a short time and find it a really friendly board.
welcome. glad you found us. ah, the delights of family. been there too. not any more. had a little heart to heart with mom years ago. said you can have compassion and me in your life or i can bow out. your choice mom. she chose compassion and me.
i have 6 girls and 3 boys all grown and 15 grand kids. they all know the rules. call first. accept no with grace and dance to yes. my grandkids are not allowed over when i do not feel well. it is not fair to them or me. they stay no more than 4 hours, usually 2.
i find asking for help without mentioning my health works best. i figure by now everyone ought to know why i asked for help. same reason as a healthy person. i need it! plain and simple. my brother rolls his eyes when i ask him to do housework. i ignore the look and say thank you, i sure appreciate your help.
i refuse to take on someone else's anger at or about me and feel guilty for what is going on in my body and life. it's their fear and frustration. they can work it out. i'm busy taking care of my attitude. it's enough work, thank you.
my mom was pretty rough on me in the beginning. all the catch phrases. one day we were on the phone and i started to cry. i don't do that. she said, i wish there was something i could do to help you. open window! i said yes, choose your words carefully and stop telling me what i should be doing. it worked! mom had a stroke 7 years ago and i went to care for her for 2 months. we got close during that time. she saw me work my fanny off for her. i was a nurse many years ago. since then she is glad to have a health buddy to talk to when it's just too much for her. giggle. i love being here for her.
i am a tough love mom. my kids know no means no and don't push it. i may be sick but i am still the mom so tough luck you got me. i will meet you half way but i will not bend over backwards for you.
in the end what matters most is not feeling like a loser or a failure just because you got sick. they used to call cancer the wasting away sickness. no one knew what it was or why. technology was not advanced enough then to know. and here we sit with the invisable illness awaiting the proof to be found. in time answers will come. a test will be invented and then we can all throw a party and still be sick. giggle.
do not take what others think within you. it belongs to them. let them keep it. words can only hurt you if you let them. have compassion for them and their lack of understanding. return harsh words with forgivness.
it's okay if they do not understand. it's not okay to be cruel. when you do not react it will stop. don't play the guilt game. it will only make you feel yuckier.
Last edited by bluelakelady; 05-28-2012 at 06:53 AM.
The following user gives a hug of support to bluelakelady: Poetnmotion (05-28-2012)
Welcome to the board Poet!
You got wonderful advice & words of wisdom
Unfortuetly your family is in denial. That is to be expected, just doesn't make it any easier. It took 2 yrs for my husband to be more excepting, but still in denial. He will never get it. Still hurts my feelings but not as much. He does like your 15 yr old... Says "you never feel good", "you're antisocial", "you're no fun", "you're boring"... I've found he says this stuff to make me mad. She will likely do this until she's an adult. I have a feeling that she will understand one day & may even be your biggest supporter.
I have 4 kids (12, 9, 8, & 2). I started explaining my problems about a year ago. I don't talk about it often but every once in awhile it will come up. If I'm having a really bad day I dish out the chores, say I'm having a really bad day, don't feel well. They seem understand alittle. But I think that's because they have seen me run to the bathroom sick many times. Unfortuetly it takes me being in a terrible flare & sick for them to understand alittle. They know I'm not lazy but they don't understand why I can't do more. I used to push myself constantly & can't anymore. But having these issues we have to learn to live differently.
it's best to not talk about it unless its really bad & you need left alone.
One thing I explain to my husband often is "I did not choose this. It is not my choice to take so many medications & vitamins. Its not my choice to have to pay so many medical bills. But atleast I am trying". He has never been able to argue with that. He knows I eat healthy & exercise. Basically you have to show them that you have not given up, you are doing your best.
They will never understand. But in time they will start to accept it.
When everything got worst for me, I didn't have many friends anyways. If I did I probly would have lost most of them. But then 13 yrs ago when probs all started I had allot of friends & lost them all... But that's ok. I don't have the time or energy for allot of friends. But the ones I have accept me as I am
Most of my family I don't talk about fibro with. I'm pretty sure my mom has explained it to them. But the last thing I need is them to try & tell me what my problems are. To say they don't believe in fibro, ect. I just put on a smile, enjoy my time with them... Then go home & rest
I don't work. Even if the kids were grown & moved out I doubt I could. I have sooo much respect for you! It is definelty not easy... If I were to guess... You probly go to work. Come home & rest then do it again the best day. You probly have to make yourself shower, make yourself make something to eat & try to get alitle cleaning done some how. You have no energy or time to do extra stuff like clean out a closet or something else you'd love to accomplish. It's so tough on us that don't work. You should be very proud of your accomplishment! It is unfortuet your family doesn't appriciate that. But thats ok because you know how strong you are.
Anyhow, I'm done rambling lol
I look forward to seeing you around!
Wow! This is EXACTLY what I needed to hear! I've always had difficulty with tough love. I can do it as a social worker but as a mom it's more difficult, especially with my youngest because she is such a great young lady, straight A student and her father has made a mess of his life so I know I try to compensate for his lack. As for mom, she never transitioned to realizing I'm an adult. She treats me the same now as she did when I was a kid. It's a dynamic I'm used to, don't like, but have a lot less patience for now that I'm dealing with FM. Dang it feels good to vent! Thanks again for listening. And caring. And giving outstanding advice. I am looking forward to reciprocating!
Hi and welcome. You will find great support here in the fibro family and like all families you will value some and have empathy with some more than others. I have been in and out over many years and have recently been welcomed back as if I never left.
Families and friends, however well meaning, can really hurt us when they comment on our illness. Blue says it all and you have to learn to be assertive when you have been hurt. This is not easy as we tend to be at a low ebb when we are full of fibro symptoms. I am really lucky to have the full support od my wife. She did her own research and has a caring understanding of my needs. Oh, she gives my a verbal kick in the butt if she feels I am unreasonable. Anyway, her 88 year old mother lives alone but comes to stay with us for a long weekend every four weeks.She,at times, can be very hurtful with comments like "in my day no man would expect his wife to do that". That could be putting out the thrash or getting fuel in, or many more things my wife is happy to do. Because of her age and some health issues people pussyfoot around her. My wife was very torn and even offered to stop her mother coming. I approached it differently from then on. Anytime my mother-in-law said or did anything that made me feel bad or hurt, I challenged her on it in a very non-aggressive way. I would explain how her words or actions made me feel and emphasised that I do care for her very much. I also explaine dhow it wa smaking my wife feel. I asked her to re-learn to think of how I or my wife feel when she is hurtful. There were a few tearful times, but it did not take long and now we get on great. I love her to bits and have to keep reminding myself that she is elderly and I need to make allowences for her as well. Dialogue has made this easier.
What can I say about your you 15 year old. She read the proverbial manual that says teenagers have to be a pain in the butt and show no support for oldies. Oldies being anyone over 25. I havae two grown up daughters aged 34 and 36. We now get on really well and they are there to support me if and when I need it. As teenagers, they were totally intolerant of the restrictions placed on me by fibro, but once they came to late teens there attitudes towards me changed. They are constantly reminding me of all we did for them rather than focussing on illness.
With regard to your 26 year old, I think a heart-to-heart with her and invite her to look up this site or do her own research on fibro.Try to keep communication flowing and always be mindful that she has her own married life and all that goes with that. She needs support too and you can give only what you are capable of. I bet that amount of support is more than you are physically or mentally capable of, but as a parent and grandparent, I know it can be so exhausting but worthwhile too.
Sorry, for being so longwinded in my reply to. Hang in there and remember mind number one first.
Last edited by brend; 05-28-2012 at 10:53 AM.
The following user gives a hug of support to brend: Poetnmotion (05-28-2012)
The Following User Says Thank You to brend For This Useful Post: Poetnmotion (05-28-2012)
See if your family will go to your appts with you and definitely have them research fibro online. My 11 yr old daughter has always gave me a hard time with not being able to do alot of what her friend's moms can. She went with me to an appt and it opened her eyes to that this IS real and will never go away. She has been easier on me but with being a tween and hormones going crazy she has her moments and I have learned to not take it personal.
Blue said it perfectly about tough love and not bending over backwards. I am sooo guilty with bending over backwards and pushing myself for my kids that in the end is worse on my body.
My mom surprised me a few months ago when she mentioned in passing that she has done her homework on looking up what Fibro was. She was alot like your mom is. My mom is now alot more compassionate and will even text me out of the blue asking how Im feeling. It helps alot more.
Hang in there and feel free to come and vent here anytime. This is a HUGE support for me.
The following user gives a hug of support to mom477: Poetnmotion (05-28-2012)
The Following User Says Thank You to mom477 For This Useful Post: Poetnmotion (05-28-2012)