@A MyFibroTeam Member, I do understand about the family, my husband is wonderful, I have 3 grown children, 2boys 1girl 6grandchildren, the 2boys don't talk to me unless I call them first they NEVER ask how Im doing, Its like if they don't hear then everything should be fine. My girl26 she has 4little ones, she does call and check in on me, I watch the children for her like at night when my husband is at home, and really all I do is feed them, my girl brings dinner over for them, and then me and the youngest one is a little girl2, we go get in bed and snuggle, I LOVE THAT! Yes I agree this is a very LONELY DISEASE! I myself is why I find myself in these groups, there like a family, except everyone UNDERSTANDS! ((Hugs doll))

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A MyFibro...

My hubby and kids are supportive but the rest of my family either doesn't want to hear it, doesn't believe that it's real, or thinks I should be doing more. This is very sad for me. It can be a very lonely disease and that is why it's so important to find support like this website

I try to remember that until doctors named MS as such they thought that was in their heads. I think in time people will get it but it's sad but it takes a famous person to talk about it for people to believe. Even though my doctor calls it FMS he still says oh that really know what it is. So what doesn't mean my symptoms aren't real!

My brother has been a massive support to me ,he has seen and recognised my struggles . he has accompanied me to numerous medical appointments despite having a huge fear of hospitals. He always has a kind word when I'm crying my eyes out. I am so lucky to have him . My parents were extremely unsupportive in the beginning and called me names like lazy ,they did not want to look after me and actively discouraged me to find answers for my illness. They bullied me. They were jealous that i was at home and they were having to work. They seemed to take there stresses out on me. It was an awful time. But I am a strong person deep down and I decided that I had no choice but to press on with finding what was wrong with me even if this was not what others wanted. It has now been several years from being diagnosed and my relationship with my parents is much improved , I live with my parents ,would probably be homeless if I didn't. Things seemed to change when my best friend was discovered dead in her flat. I was devastated, I think my parents felt quite sorry for me. Maybe they also realised how precious children are. Parents are only human and it must be very stressful for them too having a sick daughter and all that comes with that. They are now a huge help to me . My extended family are a mixed bunch , one aunt is very supportive ,she has a daughter with Fibromyalgia and fatigue. Another aunt is quite unsupportive and I get the remarks we all hate. Ignore the unsupportive as much as possible and be thankful for the support that you have. Remember people can change education is probably the key to this.

My boyfriend is great, his kids don't know or don't want to know. His mom doesn't pay attention, she's been to the house one time since I been here, she told her son that the house was awful messy, it was cluttered, but it was clean, he told her he was comfortable with it!! My family is far away, but they do ask how I am. It's rough but hang in there. (( Soft Hugs)) to you!!!