It's Really Getting to Me

that there are so many younger people on here who besides having to deal with this horrible disease are also being emotionally mistreated by their loved ones. Benign neglect or 'put downs', snyde remarks and a lack of desire to understand this illness are inexcusable in my book.

I just hope that we older ones can stick together and be as supportive as we can to our 'little sisters'. I don't know what else to say, except it pains me to keep hearing about these attitudes.

I wish there was an empathy and understanding pill for them to take. I mean, really.

People, be persistent in your attempts to educate your loved ones.

Peace and hugs.


You're so right, Josephina, and I think the problem is the perception that everyone has about the young being, well, young and healthy. We never stop to think of the young and UNhealthy. They have it worse than us middle aged folks because people EXPECT us to have some health issues and don't necessarily give us as much grief. I don't know how much clearer some of our younger friends can make it to their loved ones about how PAINFUL, EXHAUSTING and DISTRESSING this illness is. A part of me wants to reach across the miles and phone lines and give the parents and such a good talking to about how awful this disease is and how they need to LISTEN to their loved ones. But another part of me knows that isn't the way to handle things.

Again, I agree, Josephina, we must give our younger sisters the support they need and deserve during these awful times. This is a terrible illness and even sadder to see young folks suffering from it when they should be out having fun. We are here for you, please come to us when you need help.

I know Josephina, isn't it heartbreaking? I don't know how it can be changed. With all of the information available on the net, there is really no excuse that parents are not taking a few moments out of their day to educate themselves on any diagnosis given them about their children.

I suggested posting the definition somewhere it can be seen, a refrigerator, a bathroom mirror, put in their parents lunch bag or brief case or on the seat of their car?

Surely you would have thought that a rock star or fashion model would be a spokesperson for this disease, but no one has stepped forward, and perhaps for a good reason, but it could only help our cause!

Well said Josephina. It breaks my heart too. I love my little sisters and brothers and it hurts to hear their suffering too.

There's one thing that really gets to me - bullying and snyde remarks. I have heard it all my life and I take it upon myself every time I can to "educate" these horrible people who control and depress people weaker than themselves.

Thats another reason why I believe we need to learn to be strong - to empower ourselves and get away from these pathetic leeches who are obviously so unhapy with their own lives that they drag others down with them.

You know some people shouldn't be allowed to have children if they can't help and support them, especially when they have one of the most awful illness that will affect them for the rest of their life. They need to take a long hard look at themselves and think, "how would I feel if someone treated me like this?"

One day our sisters will find the strength to stand up and walk away from these people, because we do not need them in our lives.

Your true family are always here for you guys any time you need us! xx

Josephina, you are so right. It is pitiful how the young people with fibro are not taken seriously. Parents are usually so protective of their children even if they have a little runny nose, then why not with this serious, debilitating disease? It just doesn't make sense to me. It breaks my heart to see this happen.

Yes, SK, why hasn't a public figure stepped up? They have for other diseases, why not fibromyalgia? You would think one the big wigs like Oz or Phil would do a little more for awareness. It's so hard to wait for change when you're suffering.

Part of the problem, I think, is that for years fibromyalgia was seen as a mental, "all up in your head" disorder(thanks to the doctors) and that image still lingers on in people's minds.

We just need to support one another because there is strength in numbers.

im a young one and ive got bucket loads of empathy i was abused and thats why i have fibromyalgia and i refuse to let my fibro be a continuation of his abuse but i also understand that every one deals with things differently so im very sympathetic to any ones needs so maybe you shud educate yourself in getting to know people before judging you shud know better sorry i didnt appreciate your dig about us young ones maybe they have a reason for there attitudes be kind and offer your guidance i maybe you will see that they are quite nice people

I believe, Karen, that you misunderstood my comment. I think it would be helpful for you to re-read it fully to better understand my point. Nowhere did I make an unkind remark about young people. I was stating that society expects the young to be healthy and doesn't understand that the perception may not be fact.

I'm truly sorry that you were abused and that it lead to the fibro. No one deserves either situation in their life, let alone both situations.

Thank you for starting this disicusion. i thought of my self as very young having this disease but now i read others on this site r 10 years or more younger than me. i will b 30 in 3 months and i have had fibro for 3 years. i am the youngest by far in my local support group. everyone there could b my mom.

i wonder what would happen if we all wrote letters to Dr.Phil and other talk show people and tried to get them to do a show on fibro if it would get others to step out and help raise awerness. maybe the big wigs r hiding because of things once believed about fibro.

Same age as I was. 27 is young enough isn't it. But I just couldn't imagine how hard it is for these guys still in school and college around their "healthy" energetic friends. Bless us all x