Rack up another vote on the non-understanding, non-support side of the board. Few people have actively scoffed at my predicament, and I have keep in secret as much as possible.

But those who do know - are generally nice, maybe express support or empathy, but it is done at arms length.

I have no one w/in my actual environment as regards help or a shoulder to lean on. I am flying solo, and have developed other means of taking care of my life if I am pinned down --I have gardening and cleaning folks. Occasionally even my grocery shopping is done via the internet. Would love a cook, but that's another story.

I consider myself fortunate that my symptom management is mostly pretty darn good at present. But I also believe no one bares any responsibility for my life, other than myself.

I do not wish to turn my friends or geographically removed family members into care givers. I just want us to love each other

I am lucky to have wonderfully supportive friends. I am divorced, in part, because of the illness. My ex said he was tired of all of the doctor's appointments. I hadn't been diagnosed yet and I have a lot of the co-conditions and was having tests and seeing doctors for those. I understand that it was a lot...I was the one going through it. Before I got very sick, I actually had a small organization that trained service dogs. And statistically 80% of men whose wives become disabled leave and 80% of women whose husbands become disabled, stay. But the reality for me is that it wasn't a good marriage to begin with, apply stress and bad marriages tend to fracture. It's nice to read about all of your supportive husbands.

And while I have very supportive friends, I still feel like I don't want to "burden" them so I keep a lot to myself. My doctor recommended that I find a support group. So, here I am. Nice to be here among kindred souls.

I guess my parents kind of understand but all my mom ever does to me is b****** at me about why im not working why my place isnt spotlis etc.My father on the other hand is nothing like that infact he has done a lot of research on fm.I do have a few friends that really understand but i moved away before i got sick so dont see them very offten and the friends that i do have where i live understand but have there own lives so i dont see them very offten.The one real person that really gets it is my x boy friend though he helps me a lot when im really sick he takes me to where i need to go he helps me shop and clean. Sleepless

I'm so thankful my hubby is supportive. He was shocked at the change in me when this happened about 24 years ago. I was a happy person, going to school and working part time. I was so looking forward to a career in accounting...then WHAM! A total change in me. From a happy, fully functioning person to a slow moving, pain filled individual. He knew something really bad happened and he's been supportive. He really saw how I was once he retired and realized how much time I have to sit in the recliner. He wasn't quite aware of my limitations until he was home with me each day.

However, my son has called me a "pill popper". But he's a drug addict, so why is he calling ME that? LOL I guess he sees himself and his pill popping ways.

And what "letitbe" said is true for me, I get some empathy from a few others, but it's at arms length. They SAY they understand, but NEVER EVER offer help.

And others totally ignore me. I've lost friends due to this. Oh well, they weren't true friends if they left me because I have pain.

I like this fibro support group. We understand each other.

Isabee (Bella), my husband left me too. And my family doesn't care one way or the other. I've learned that people don't have to be related by blood to be family. But even so, I felt I needed to find a community like this of people who truly understand. I'm glad we are both here!

And I include you both as well, gypsy and letitbe... I hope that a community like this can provide support for us all.

It all depends. When I have to jump up and close my door, cause the noise from next door is making me crazy, no one "gets it". No one. But this, too, is part of fibro. Low tolerance for loud noises, and when aging, too, difficulty hearing when others are speaking too.

So grateful for my family, but there are times they just can't stand my responses. PBS had a man speaking about the genetic changes that happen from loss of sleep. Very important info for us. Wish I could'of heard it.

When I first got sick, I hid it from everyone. I keep thinking I would be back on my feet in no time. Never happened. Went thro hell with my family and still do not have great support from most.

When my Mother was diagnosed with MS 30 yrs ago, we had a family meeting. Everyone was made aware of her illness and her new limitations. I often wonder if I had dome the same thing, if my family would have been more supportive of me.

I understand where you are coming from, Suca. I hid mine from a lot of people for years. The 1st person I told was my mom and it was because she actually saw the change in me happen. And it was her suggestion to look up the term fibromyalgia. OTher than that, I was ashamed to tell anyone because I didn't want to look weak.

I, too, thought I would eventually get back on my feet and go back to the way things were. Nobody would have have to know. I also suffered from a back injury at the time so the only thing I told people was that I hurt my back and after whatever treatments they give me, I should recover eventually. But then like the fibromyalgia, I was told that my back injury was also permanent (as well as a few other things they discovered) and there was no going back.

At that point for the next several years it was a struggle getting support from family and friends. I did lose friendships but I also gained some with those that could relate. I lost a 4 yr relationship with a really bad ending, too. But it showed me that he wasn't right for me. And Now I'm married to a man that is supportive.

I guess having this illness you learn to weed out people.... even though it hurts. Life is a 2 way street. It's a give and take relationship. Unfortunately, some people don't want to give back and only expect things from you. Some people can't have a little more compassion, either.

My husband also wants to "fix It" so if I tell him what he can do - rub my back , he feels like he is helping. It's important to him to know when I am having a good day.
Not everyone is nurturing or "nurse like" . Some people are only able to be supportive when they too are in pain, and once their pain is gone, they are less supportive.
I usually don't tell people unless they ask.

isabelle1954

In the beginning everyone was supportive and slowly that dwindled away as people became tired of hearing about it, tired of dealing with it. Most people left me..only a few true friends stuck around. I lost my marriage, lost most of my family, all of my in-laws... but gained a lot of online friends, and a few closer real friends. It's really hard on relationships.