I’ve started and erased this 3 times now. I’m finding it really hard to put my thoughts down in a clear manner. I’ve been with Scott almost four years now of which we’ve been engaged for three. Our relationship was great in the beginning. I thought I had found the man of my dreams. Then my health started declining. When I was diagnosed with TN I cried for days because I know a wonderful lady who had neuropathy and she is a shell of her former self. I saw that as my future. At first Scott was really supportive but as the pain has gotten worse and I was no longer able to do the things I once did I started seeing a different person in him. He can’t comprehend the amount of pain I’m in so in his eyes I’m obviously making it up so I don’t have to do things. Our main fights are about our lack of intimacy. He says I use my TN to keep from bring intimate with him. No matter how many times I’ve screamed that I want my old life back, that I don’t want this illness…it never sinks in with him. He just doesn’t get what this illness makes you give up. I know without a doubt that we will never get married. I don’t know how much more of this I can take. The stress he is adding makes me have more flare ups, not to mention the depression. How do I make him understand? Or is it a lost cause?
Amy, this is such a heartbreaking situation. I am so sorry that you are in such pain and that your fiancé is struggling with your diagnosis. It seems like there are other people here too whose significant other think they are making this up, though that whole concept is inconceivable to me. No one would ever make this up. When you have disagreements, does he seem more upset about the situation or is he just angry? The fact that he was initially supportive might mean that he is simply worn out. Dealing with this condition, even as a partner, family member or friend, is exhausting, and especially so when it has been going on for so long. In the beginning, you think this is just a bump in the road, but when you realize that there is no end in sight, it can be devastating and relationships do suffer.
Personally, I think the only people who can understand what it is like to have TN are the others who have it and the same goes for other medical conditions as well (for example, I've never had cancer, so I can't truly understand what that is like). That said, there are so many people here who are searching for answers for their loved ones who don't have TN themselves but still "get it", so it may be possible to bring him on board. Has Scott read any information about TN? Or, would it be possible for him to come along to your doctor's appointments? That might help him to see what a serious issue this is. Also, if you haven't seen it already, there is an excellent write up about caring for someone with TN that Scott might want to read: http://www.livingwithtn.org/forum/topics/a-writeup-about-caring-for
If it were me, I wouldn't make any major decisions regarding your relationship right now. It's really hard to see clearly when one is in pain and under so much stress. I would focus on looking after yourself as best you can. This site is full of great information and I have learned so much here. One unexpected benefit to joining this forum is that it has taking the pressure off my own marriage. For a while, all of our conversations came back to my pain, which wasn't very nice for either of us. Now that I have an outside support system, it doesn't come up as much. It's still there, of course, but it's not the main focus anymore.
I hope this is helpful. I'll be sending you good thoughts.
Take care,
Chris
I wish it was my decision to make. He told me last night that he didn’t know if he wanted to be with me anymore. In addition to my TN, I have a mentally ill teenage son. He says its just all too much for him. That he feels I am holding him back from doing the things he needs to do. I have no family to turn to and I gave up my home to move in with him. So out of some sympathy he won’t put me out on the streets but it doesn’t mean he doesn’t want to. I am a survivor, always have been, so I will find a way to pick up the pieces and move on. Sometimes it just feels so dark and lonely in my world. Thank you for all of your kind words. They helped on a day like today.
Oh Amy, I am so sorry. I wish it hadn't come to this. Breaking up with someone is bad enough but it's even harder when you have to find a new place to live and especially so without family to depend on. I believe you when you say you are a survivor. You sound incredibly strong and I know that you will find your way through this and to a better life for you and your son. This is Scott's loss.
More good thoughts are heading your way.
Take care,
Chris
It's been a few days since someone added to this thread, so I thought I would ask: How are you doing, Amy? As the husband of a TN patient who has had pain for 16 years of our 32 year marriage, I know some little about this territory. I hope you are staying connected to others who understand what you are experiencing.
Go in Peace and Power
Red
My relationship seems to have taken a turn for the better but my TN has taken a turn for the worst. I think the hardest part for him is that when I’m in pain and he’s asking what can he do to help and its the same answer every time “nothing”. It’s that feeling of helplessness that makes him angry and who better to be angry at than the person making you feel that way. So all I can hope for is understanding on his part and a little faith in him on my part.
Feel free to give your husband my web mail address at ■■■■■■■■■■■■■■■■■■■. I may be able to hear him as one familiar with the territory, and possibly suggest things he can do to feel or be more effective as your partner and team member.
Regards, Red
Hi Amy, that's great you and Scott have found a way to work things out! I'm really happy for you. I'm sorry to hear that your TN has escalated, though. That is the last thing you need. I find it really encouraging that Scott is asking what he can do to help. It's kind of funny because my partner Matt was just saying to me again last night that he doesn't think there's anything he can really do to help because he can't stop the pain. This has come up a few times so I think it must weigh heavily on him. I just reminded him that a bunch of doctors with all of their medical degrees haven't been able to pinpoint the cause of this and fix me, so he shouldn't feel as though he is letting me down, because he's not. In fact, he does help me a lot. For example, he heats up my face wrap and brings it to me and makes tea for me when I need it. Those may seem like small things, but they make a huge difference to me when I'm in pain. If there is anything that helps to calm your pain, perhaps you could ask Scott to help get you what you need. Then, he could feel like he was part of the solution instead of just helplessly watching you suffer. That might make a difference. I do hope that he takes Red up on his generous offer as I think it would be very beneficial to get his perspective.
Please know that I am thinking of you and sending good thoughts your way.
Take care,
Chris