So I'm going through the usual crap with my doctors.. Being pushed from person to person not getting any outcome and its taking a toll on my relationship with my partner of almost a year, because I'm getting so frustrated and feel so alone with everything that is going on and I feel like he doesn't really understand what I'm going through.. There is nights I can't stop crying either because of pain or just sick to death of being in this situation! In don't know how to make him realise how scary all of this is for me? We are arguing a lot more and I'm afraid this stupid illness is going to ruin a once brilliant relationship.. He says he will always be there but how much can one man take?

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  • Oh sweetie, I feel your pain. SO frustrating, and SO lonely.

    For me, my symptoms became too much to bear in early Feb and it's been a battle getting help, and I feel so alone. My partner of several years had a really hard time at first because he was watching me in pain and hearing me cry at night and he sometimes would switch on the light and jump out of bed and shout that he was taking me to A&E, which I insisted I wouldn't go to because they will do NOTHING and it will be a waste of time and a possible night's sleep. He couldn't understand why I was refusing to do anything, like go to A&E, and he would actually get angry with me. So, eventually, I decided to spend a day waiting in A&E and he left work to come with me. And he saw first hand how stupid it was, and how nothing got done. And now he understands that this is a LONG road and there are no quick fixes, but a fix is on the way... eventually...

    But he had to first understand that he can't do anything to fix this. That's his first response: how can he make it better. Men don't nurture much, and empathy is hard because other than kicking them in the ballocks repeatedly, which you wouldn't do to someone you love, there's no way for them to understand the pain you're in. So connecting through this is so hard.

    We have settled in now for that long road. Somehow, he's come down a few pegs himself, and he's opened up and listened to me telling him what I need from him is to love me... keep loving me and don't stop. Don't not make advances on me if he feels like it, don't be afraid to touch me, in fact, feel free to touch me as much as he wants. I need that contact with him because he's the only one close to me who gets to see the every day shit this is. He understands now that the fix he can offer is to hold me while I cry. He understands that my interest in him hasn't diminished, and that my love for him hasn't either, and that when I get emotional or angry it's not because of him (even if it's occasionally directed at him) but because I feel alone, I am full of worry, I'm in pain and I'm also bored out of my mind because I can't live the life I used to live.

    And we have to keep coming back to the same point again and again, looking at the messages I'm putting out in my pain (I want to take a handful of tramadol, I want to tear my skin off, I don't want to live because I feel desperately alone and doomed) and helping ME to realise that he's scared shitless. He doesn't want anything to happen to me, he doesn't want me to go away, he's afraid I might actually do something rash. He doesn't know what he can do, he does everything he can, but last night he asked me to please promise that I wouldn't do anything horrible without first talking to someone, him or anyone else. For most of this week, I had been busy convincing myself that he's so fed up with me he's trying to do everything he can to spend time away, and last night when he asked me to sit down on the couch with him I very nearly made myself believe that he was about to tell me that he couldn't do this anymore. When I told him that I had thought that, he was nearly brought to tears of frustration that I should have so little faith in his ability to be with me even in sick times.

    And so what had been a couple of days of feeling like we were falling apart turned gently back to understanding. I see my part in that feeling like there's a wedge being driven into my relationship, and a lot of it has to do with my inner landscape and projecting on him my worst fears. I am guilty of this. And in doing that, in reality I am often pushing HIM away, and not the reverse. And when I am made aware of that I can't believe what I'm doing. I have to try very hard to change the language I use on myself about myself, I need to remember that help is on the way and I need to keep my wits about me and hang in there, and I need to remember that I'm obliged to hang in there not only for me but also for all the people who love me and whom I love who can't do anything to help and can't be with me 24/7, but who would do anything and everything for me if I needed them to.

    I don't know if this helps, me sharing this. But all I can say is be gentle with yourself, and be gentle with him. I would express to him that while he's supporting you, he should also be doing what he needs to do to look after himself whether its being allowed to go out and get some exercise or go out with friends, or maybe him finding someone to talk to... people in support or caretaker positions need very much to have support, themselves. And when we're in so much need it is SO easy to forget that they aren't superman and they need someone to get THEIR backs.

    I've seen this article come up a couple of times in my facebook newsfeed. I don't know if you've seen it, but there's very helpful information and resources on this page:

    Stay strong, both of you. Be honest, be gentle, and cut him slack, cut yourself some slack, and believe in him if he's there for you. Don't push him away by believing that your pain is too much for him to bear, just let him in and be clear about what exactly he can do to help fix you when you're crying (imagine how helpless you would feel is he was constantly crying and you had no direction to help him). And don't think for a second that he knows instinctively what to do. Absolutely no disrespect to the men, but men simply don't instinctively nurture, and even the most nurturing man won't be able to guess exactly what he can do to best help you when you are showing all the signs he would read as you desperately in need of help. So, give him an action. "When I cry, you can do __________ and that will help me cope." Help him help you. And help him find the space and support he needs so that he can continue to be strong for you.

    Love is so hard, and it's terrifying, and it's so rewarding. I hope you guys are ok. Hugs xx

  • That site was such a great help! I showed him it and everything seems to be great now.. We had a proper talk about the endo and I feel like he finally gets it.. Thank you so much xx

  • Ah super! It's a good site. And the relationship thing requires work every day, but its good work when everyone is dedicated to it and on the same page.

    Best of luck to you both, and be well xx

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