My children don't understand anything about chronic illness...and they are 39 and 44 years old. I think it is hard for children of any age to wrap their mind around the changes that we have to go through to live with our disease. I almost wish there was an outward symptom that would let people know that we aren't as well as we look.

My oldest daughter, a very successful investment banker, informed me that she and my granddaughter could no longer participate in my angst. It took the breath out of me.

I have struggled to try and understand their need to distance themselves from me at this time and all I can figure out is that they can't stand to see me failing physically.

The worst thing about chronic illness is the emotional turmoil we have to go through accepting what we cannot change.

I think I "fooled" our daughter more than I have our son. Our daughter is a social butterfly, worked, did well in school, had lots of friends and a TON of energy to help around the house. She has rheumatoid, juvenile arthritis and has flare ups the odd time but I think she'll be lucky and escape the FM curse.

Our son is more like me. He's already complaining of the odd aches and pains. I'm very concerned and worried that he has FM, although I'm wondering if he looks at it as an attention getter. He knows I take it seriously when he says his back or arm hurts. Just not sure yet. As I've posted, he also has a few other things he's been dealing with so it will be harder to get an FM diagnosis with him. He doesn't get when I'm so overwhelmed with stress, work, tiredness, FM etc. to just let me be. Life is more draining when he's around but that's just the way he is.

I think the big thing is to be honest with them. Explain what FM is and let them know when it's a FM flare up or when you have pain. I wonder if they think we just don't want to be around them when it's just the FM?

I remember when my own Mom was ill and I was a teenager. All I wanted was for her to take care of the things tht were important to me. There is that insulated bubble of self intrest that some teens live in most of the time. Not a judgement, just a fact.

patty, I'm sorry your daughter and granddaughter are treating you so badly. I hope they come around and you can continue to have a relationship with them.

Thak you Carrie. I have finally found a way, after working with an excellent Psychiatrist at Oregon Health Sciences University (OHSU) to inter act with them in a way that does not threaten their security. I do not mention any health issue in any social situation where we are together. I only answer questions when asked.

This isn't as pity-patty as it sounds. As Mothers we all will make or take any action that will bring peace to our family.

And...I have a great group of old friends. Most of whom I've know for more than 30 years. They listen and care and are there for me. It is the love they give to me that allows me to move past the sorrow and share my love with my children.

I really feel for you. I don't know what I would do if I had to deal with this. It is hard to explain fibro. My kids are 27,21, and 17 they all know I have fibro. They know there are days when I am not so good and days when I am okay. My husband is really the only one who knows what fibro is all about on a day to day basis.I think maybe you should print off some of the fibro articles and leave them out where your children can see them. Have you tried sharing any of the stories off of this web site with them? I would be as honest as possible with them.

I really feel for you. I don't know what I would do if I had to deal with this. It is hard to explain fibro. My kids are 27,21, and 17 they all know I have fibro. They know there are days when I am not so good and days when I am okay. My husband is really the only one who knows what fibro is all about on a day to day basis.I think maybe you should print off some of the fibro articles and leave them out where your children can see them. Have you tried sharing any of the stories off of this web site with them? I would be as honest as possible with them.

i got dxed with ms when i was 23 fibro didn't come till 2005, so my kids were fairly young when i got sick..5,3,2,6 months and not born yet..we done other things inside like board games. when i could i tried to make it to all school functions if just to show face then leave..some times they don't understand. like you i gave in for so long that when one of my daughters was 16 she got in my face and told me to shut up..when i told her not to tell me that she rolled her eyes well i slapped her in the face..next thing i knew she called the cops and said she was abused..cops asked what happened i told them. she got informed it wasn't abuse but she is now living with her father along with her brother who went with her..it breaks my heart that there gone but relize now it's for the best

I was diagnosed when my kids were 5 and 2, so they are used to me feeling this way - I don't get the "you used to do stuff" guilt trips. My son has perthes disease which had severely limited his activity for a while - he was worse than me, in dual hip casts, yuck. But he is 10 years old and better now, so is making up for lost time. I work full time and have a housekeeper that does all my housework and minds the kids after school, so my time can be spent doing family stuff instead of wasting my energy on cleaning and stuff.

It breaks my heart when my kids say "I know you won't be able to do it - you're too sore", but they do understand. If I am so bad that I have to stay in bed, they remember to come up and hug me every now and then. My eldest child is still only 12 so I we are only just beginning the teen angry years. I am quite firm with them, and I have the energy to do this because of the home help I get. I am also a teacher, so discipline comes naturally, lol. I have no idea how the teen years will pan out, but I do make the effort to run them around to sport etc. and always go to school functions even though I am never there to pick them up from school. Sometimes I really don't feel like it, but I think it is worth it to see how happy they are that I am there.
I hope this helps some.
Ness

my kids 18 & 10 can generaly tell good days from bad and try to help out on the bad.. i make up for it on the good days though they are great

My son is 18 special need,he's good,he can tell when i'm not feeling wellor hurting

My 2 oldest childern Valie 25 and Chazz 30 act like Im making this all up like Im insane or something they wont even discuss it.My Katie who is 18 and Amanda who is 12 realize its all very real.Now when there all together I dont know if they are divided by my disease or not..I never hear anything about them fighting or dicussing my illness.Since my older 2 are in denial its really hard on me they expect me to contiue to make all big family meals and have the house prefect.It isnt ever gonna happen again,As much as I love my childern I wish they would all just try and understand........Hugs to you all I know it can be a heartbreaker......

I cannot even Imagine trying to deal with this Illness...and children..well, i do babysit 8 hours a day...5 days a week...and THAT alone is very diffacult...I do not know that I would have the strength to carry on...
So, I have no advise to you...except to take care of self FIRST so you can continue {for as long as possible} to care for your children...
God bless you...Bonnie

My daughter was 15 when I was diag. and the typical teen girl, a cheerleader, very active and she couldn't understand it at all. Then her senior year she got mono and her recovery was slow and the fatigue overwhelming and she said she couldn't believe that was what I lived with every day and from that time on the was a different person. Not without our teen angst but she understood not being able to walk up a flight of stairs without having to rest. My son is now 12 and I discuss with him that every day is unpredictable in regards to how I will feel and we will take thing as they come In regards to our plans to go on outings etc.
If I feel bad, its a movie etc. really, really bad movie at home with junk food. They just really want time with us. My son just now asked to play a game with me, which I would rather have a tooth pulled than play a game and I need to sign off and play with him so take each moment as it comes.
Your friend
Holly

I have 4 grown kids & all but one are supportive & helpful.
The one who isn't is 20, has her own apt. & works full time at Walmart. Just before she moved out she told me that I could work if I only tried; that all I was was lazy. That nearly killed me. I have had FM for 17 years and am disabled by it. I CANNOT work but wish I could for the extra money & self esteem. My husband yelled at her not to talk about things you don't know anything about.
She doesn't call or visit and she says she's ashamed of me. I can hardly express the grief I feel. She was always so sweet & loving and now she wants nothing to do with us. I am broken-hearted.