I've had CFS for 35 years and have no friends in my life anymore..other than occasional contact and less personal ways. At first years ago people just said I was complaining to much.,well they'd still say that if they were around me more, we just don't have that level,of discussion anymore because folks have a problem with it..it either touches their own issues and fears of they say judgemental things.

My 9 yr relationship dissolved because of my medical limitations and my partners inability to communicate Their their feelings about it. If you can just encourage your boyfriend to share his feelings rather than distance. I've known couples where one person is chronicly ill and the only way it works is to have really good, honest, "come to Jesus" conversations on an ongoing basis. My partner couldn't do that but hopefully yours will. I can appreciate that our illness is a major impact on their lives and what they hoped for a relationship. There is a weekly phone support group now for caregivers and family of CFS folks...it is through ME Action ..if you google it, they should have the phone number. Maybe he would benefit talking to other partners. Best of luck to you.

I've tried to get him to talk to me about it. He won't. He thinks it's all I my head, like simple depression. He doesn't understand the emotions I have instead just blames me all the time and threatens to break-up, which makes me feel like it's my fault which I know it's not. He told me I need to just put a mental block on the fatigue and move on with my life. He obviously does not understand. He suffered from depression /suicidal thoughts very briefly when he wasn't younger and that's how he overcame it. This is NOT the same. The next breath he is telling me he is and always has supported me. He really doesn't get it. I just don't know.
I'm afraid what you have mentioned of your relationships deteriorating is what I am experiencing and fear will continue. I'm it afraid to be alone but do appreciate friends and family. Ug.

People just cannot feel what we are feeling in our bodies when they themselves are not suffering with this debilitating CFS. So it's a high expectation for us to find those special people who will love us despite so many limitations in a relationship together. However, those people do exist and a loving relationship is achievable despite one person having limitations with CFS or another illness. It just has to be the right kind of person.
Love is powerful.

Sadie, Men in general are known to want to FIX something--that's what they do, it's in their makeup. There is nothing to fix here. Maybe preface that, and just say I just want to tell you how I'm feelin' TODAY.

I think, if there is NOTHING to FIX, then they don't want to hear it; I've figured this out from past experiences. Try not to make this a daily thing of complaining and this is maybe how he sees it.

I don't know if he would be more understanding if you ASKED him to help you with a chore so he could FEEL like he's helping or contributing to the relationship.

Maybe he is just unfeeling--this is something that I didn't have a chance to see BEFORE I got married the jerk!

Small story--We had been married less than a month when I got stung by a bee. I slept on the sofa because it was so painful. My arm swelled up by 2 sizes, the doctor wanted to drain it because it was so big, and he didn't want me to work. The arm was also purple from the wrist area to my elbow for about a week. His only response to me was--YOU'RE A BIG BABY! I wasn't even crying, I was only stating the facts to him when I got back from the doctors. When I had a migraine, 1 time, he said--Can't you act like you don't have one--this was after I vomited several times. I divorced him!

Maybe get a GOOD book that explains this condition, and read small segments at a time to him. Read it in front of him while watching TV and BRIEFLY bring up some good points that the book points out, like explaining the symptoms and remedies.
.

Wow energylost! Thank god you divorced him. So insensitive!

I definitely do not complain often. I am honest when he asks what I am gonna do for fun on the weekend (fun? Ha!) or try to talk if I hadn't a bad day.
One of our stressful moments he was really trying to pick s fight and I told him I would send him a couple of articles to read, so that he could understand my condition better, and realize WHY I am not trying to engage in any fighting or hurtful behavior towards or with him.
Since then if he continues down these irrational behaviors I remind him of my stressors and his anger just increases and tells me "well then stop doing such and such..." which is TOTALLY UNTRUE! He totally tries to play victim and I find myself getting very angry these days.
He just recently told
Me yesterday that he will be there to listen to my fatigue but that he honestly thinks I need to do this alone. I need to figure it out. That I need to just mentally block it out like he did with his brief depression. Not let it rule my life. From the beginning of our relationship he has demanded me to tell him all about me and my fears and weaknesses. Last July I finally did. Well I had to. I couldnt fake anymore. I was bed ridden. But I also chose to tell him of my past & let him in completely. Since then he has thrown all those insecurities back in my face when we argue. Total judgement. So since the last ordeal a couple days ago I have decided to put my walls back up and pretend strength. The next one He is out. I have already proved way more mentally strong than he is and his unwillingness to work on his own dark side or vulnerabilities makes me way less attracted to him and is NOT someone I want in my life anymore. I'm tired of getting yelled at for not doing one thing and then gettin yelled at for doing the thi he asks. Angry.

Yeh, my ex kept quoting her high school coach about how you can " think your way past any pain" and just keep pushing my body. She also insisted, without trying to learn anything about my condition, of why I was being prescribed the meds I was taking, that I should just throw my meds out ( I was only taking two) and I'd be better for it. Well, actually, I was taking an rx for bioidentucal hormones since I was 20 years into menopause and it was the only helping me sleep and have any sort if sex life. She was dismissive of that as well, and then looked surprised when she noticed on the package that it was actually prescribed by my gyno....as if I'd made the whole thing up? ! Yup, she was the expert being 10 years away from her own menopause, and telling me since she was a social worker at a CHILDRENS HOSPITAL and worked with pediatricians, that she "knows all about medical things". Aaaargh! I do think the right people can be out there for us, but mine surely wasn't it, and yours sounds awfully familiar I'm afraid to say. They have to be willing to do THEIR part, and judging, blaming and put downs are not it.

Being told to just "think your way past it" is the most aggravating thing. We have physical limitations to what we can do, yes there is a mental side to the illness but I'd argue that it stems from that lack of energy and not being able to do what we want or having enough freedom. Sadly I haven't had a serious relationship since I got ill and I'm sorry to hear about all of these partners who sound more destructive than helpful.

My bf never understood, when we meet I was upfront, we moved in together and everything changed. We are now living as roommates. And, I was the one that ended the romantic relationship. I feel, me being happy and taking care of myself is too important. And, his behavior was too stressful. And, my specialist was very clear that excursion of any kind can be too much.

My bf never understood, when we meet I was upfront, we moved in together and everything changed. We are now living as roommates. And, I was the one that ended the romantic relationship. I feel, me being happy and taking care of myself is too important. And, his behavior was too stressful. And, my specialist was very clear that excursion of any kind can be too much. If you can get him to talk, perhaps a counseling session, but people don’t change and your illness isn’t going to change. Be sure to take care of yourself.

i was just thinking about the spoon theory. here is a link to a place to find it: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

xo