Hi! I have been here before. I really don't know what to do. I am supposed to marry my fiance in August and for the past month or so we have been arguing. He has TN among other things and I have tried to cope and understand and figure out what to do but everything I do is wrong. I have tried to love him and support him and be there for him but when I ask for the same in return, I am told I am asking too much. Is it wrong to need him? Is it wrong to want to go out and do things with him? I am trying not to be selfish and to understand but it doesn't work. I thought that if I was there for him and loved him enough, it would help him and make him feel better but nothing works. I just want him to understand but he doesn't. Sometimes I feel like he is only with me for support and so he doesn't have to be alone. I can't get him to go to a different doctor and ask if there is anything new. He thinks he knows it all and that I can't possibly know what I am talking about. He does not want the surgery which I know I have mentioned before and the surgery has to be his choice because he is the one that will have to deal with what comes afterwards. Sometimes I think that he would rather be alone and that he is stuck because he has asked me to marry him and the plans have been made. There are other outside influences affecting the relationship but I just don't know how to do this anymore. I feel as if there is something wrong with me that I can't help him and make him feel better. Any advice would be greatly appreciated. Thanks.
I'm so sorry to hear how bad things are.
First, you mentioned the surgery last time you posted -- is he even a candidate? I ask because he's atypical and that usually means you aren't a candidate. So it might not matter whether he wants it, it just might not be available, or he's afraid it will make his pain worse (which happens a lot with ATN who opt for surgery).
It is not wrong to need him, you love him.
When you ask if it's too much for you to ask him to go out and do things with you, unfortunately, sometimes the answer is yes, it is too much to ask. Going outside can be a HUGE trigger of pain, and having a severe attack outside the comfort of your home is an awful experience. To be honest, I rarely go out at all for that reason.
How long has he had ATN? I know you want to help by wanting him to try new doctors, etc, but I know that I would probably not respond kindly to someone in my life pressuring me to switch doctors or try a certain med. Unless he's new to the condition, it's likely he's seen many doctors already, and/or tried the meds that might help his particular type of pain. It can be annoying when people pressure me like this.
A good example -- I have ATN/TNP, no compression on the nerve, and am not a candidate for an MVD, at all. Yet my mom saw a video where people with TN were having successful MVDs even though their MRI didn't show a compression. Therefore she thought that I wasn't doing all I can to help myself.
She thought I should be going from doctor to doctor until I found one willing to give me an MVD. But I don't have classic TN, and she didn't understand that my pain is different -- she saw people having MVDs without a compression, so she thought since I didn't have a compression I could be one of those people. But it's very unlikely an MVD would help me since I don't have classic TN -- it would probably worsen my situation.
All that aside -- the best way my partner has helped me is just by being present. Sometimes I just want to lie there in silence, but I like that he's sitting near me, reading or watching tv. That makes me feel safe and helps me. He's learned not to ask me who I'm feeling all the time -- if I'm actually feeling okay I feel like it's a jinx to talk about it. That's not rational, but it's what it is.
I don't know how old you two are, but chances are that he's not going to want an active social life until his pain is under control, and even then, there's always the fear of when it will come back. If you're young, and going out and socializing is important to you, you need to accept that he might not be there with you.
I don't mean to sound harsh, I just think it's important you understand the reality of the situation before getting married. I'm more than willing to discuss it more with you, here or through private message.
And finally, you are a great person to support your partner and come here, ask questions, research, etc. Don't forget that.