1)This could be due to lack of knowledge, understanding, being too busy with their own lives, or they have difficulties coping themselves etc.
2) i.e. you find yourself trying to physically do more than you should, or perhaps make out that you are feeling than you really are, in order to spare or reduce their stress or anxiety.
This is purely for interest, as I find myself in this situation, and want to know if i'm on my own!
I feel that my partner responds quite well most of the time to my condition. If I am having a really bad day, he seems to know how best to help me and ensures that I don't do too much, as I have a habit of doing too much and then suffering afterwards. But I am not sure anyone can truly understand what pain we are in unless they have suffered themselves.
I find actually that my family do not seem to really understand my health problems and think that it is not as bad as I make out, which makes me feel awful as there is no way to really get people to understand fully what we are going through.
I think you need to be open and honest with people if you want them to truly try to understand what you are going through, I have found it a very difficult time, but if I just want a little moan or a cry to my partner even that just makes me feel like someone is listening to me and although he may not fully understand the pain I am in he knows I am suffering and tries to do what he can to help.
Hope you get the support you need
xx
hello, sorry i don't have a partner sadly,, but i do find it hard to let people know how i am coping or more not coping, as i was always the helper for my family, i honastly now believe that unless you have this fibromyagia no one can ever really understand what pain agony fatique and depression,and the big impact it has on life, its so true when it is called invisible.i think we should all wear a badge tc soma x
I find that people don`t understand how my needs are. Some do some dont. My real friends are very good, but the fare weather friends don`t want to understand. My partner just dos`nt understand. He thinks that life should be the same and that I am able to do the norm as to how it was before my condition started. I really dont think he deals with illness or conditions well, its a case of hes frightened (I think) I maybe wrong. As we dont live together I deal with it on my own, my Sons are very good. Soma yes I agree with you, we should have a big badge saying we have Fibro, but them some people will say the same, we will never change their minds. x
My bf responds brilliantly to variances in my condition, he encourages and supports me when I get the mad notion to do something - but is way more practical than me. When I am feeling fragile he looks after me so well ... he can tell when I'm starting to flag before I do a lot of the time.
He suffers from curvature of the spine with enormous back and neck pain, I do my best to support him but I know that for the first time in my life I have met someone who supports me more than I am able to support him. Needless to say I absolutely adore the guy.
My daughters get scared and impatient with how variable I can be - I try not to lean on them too much as they have theri own lives to live and shouldn't be weighed down with having to care for me.
Julie xx
my hubby does his best i think, if i need anything done or some help if i am having a bad day etc, he will do anything for me but i have to ask him, he doesnt think to do things without being prompted, but if i am really needing help with something he will say, "you only have to ask"so i am grateful, he is quite kind.
yeh, me and my partner have issues...he is a care worker but when it comes to me...he cares too much n over protects sorta...he has a communication prob i think...possible assbergers...he even thinks so...its all very hard... 
Like Julie, my chap has medical issues of his own, and coped with his father's severe clinical depression for many years, plus his mother's and brother's illness (which is the same hereditary condition as his own), so he's pretty good. He was a little grumpy when I first had problems, as I don't think he quite understood, and I was too proud to admit when I was tired or in pain, but 12 months on, and with a fair bit of reading under our belts, we're doing ok, and he understands a lot more. Although, he's due a major op in October, so it's my turn to support him, then!
Hope you get the support you need!
Sara xx
My husband was good at first, but I sometimes feel now that he thinks I am not making it up as such, but using it when it suits me. We have just come back from holiday and I had to unpack clear up and generally make good for all 5 of us and got very little help from anyone. It was almost as if the holiday must have cured me and it was all back to normal (or life before Fibro). I bought a really good book for him to have a read of but I dont think he got very far with it. As we often say, it is often invisible so goes unnoticed.
Oh well, he has tons of good points too so I shouldnt grumble too much
x
hi there well im kind of lucky.my fella has fybro /m.e so he understands and gives me all the support and understanding i need.
secondly i have our bad days when one of us is worse than other but it does help him having the illness.
hi my husband thinks its all in my head told him to read up about it but not interested at all
How many of you had to give up your jobs and how did you manage, how many people Still work how much time do you have off sick
Does anyone else have strange feelings all over your body nightime. Its as if you need to stretch, not like you want to, your body has to?
How can you get your employers to understand what its like to have Fibro and how you don't know how you are going to feel day to day?
Joke.. Things NOT to say to someone with a Disabling Chronic Condition
Butterfly Warriors 🦋💜
