I'd like to chime in from the other side - I'm the spouse that is trying really hard to both understand and be supportive. It is encouraging to read the posts that talk about explaining what you need us to do to help. Often, my problem is I just don't know what to do! There are times when I get frustrated because it feels like we never have a "good" day. It is hard to think back to even a year ago when things seemed to be easier and my wife could do more. It is hard to understand that it gets worse and good days get more infrequent. Sometimes we need a reminder - The fibro takes its toll! It is exhausting.
When I find myself getting frustrated or upset, I try to remind myself...Imagine what it would be like to be in constant pain. I personally have had severe stomach issues that for many years were not in any way diagnosed. I remember what it was like to have stomach pain and not have anyone believe me or understand the toll it took on me. So maybe it is a little easier for me to relate to the fibro because I remind myself that fibro is like my stomach issues only throughout the entire body. But remember, not everyone has had these issues and as such, they just can't wrap their heads around the pain. Explaining your symptoms and frustrations is helpful because it gives us something tangible to grasp on to. Again, telling us what exactly we can do to help makes us feel like we are useful in some way. It is hard knowing we can't help to take away the pain - we feel hopeless and helpless too. But if your significant other doesn't show any signs of trying to understand your disease and is always getting upset about your behaviors, that person doesn't deserve you. There is definitely a difference between someone who wants to help but doesn't know how and someone who just doesn't care. Find someone who cares. I promise, we are out there!

Decide what you want him to do for you when you feel bad and tell him. It is difficult for people to know just what to do for you. Many people are solution oriented and if there is no solution then they get frustrated and blame the victim. So decide what you want from him when you feel bad and ask for it.

I actually married a somewhat emotionally unavailable man because I couldn't take all the touching and even he used to say, "every time I touch you it hurts." Through the years we have settled into each other. I am sorry you feel you have to be alone but I do understand the dilemma.

I am having similar problems with my partner. We use to be really active together as we played in the same sport teams. We are slowly getting there. I got him to read my book 'living with fibromyalgia' which seems to have helped a little bit. I have found that when I am having a bad day, or can feel a flare up coming on, then explaining what he can do to he seems to stop his frustration as he then feels like he is actively helping me 😊 x

Thanks Erika