I do not actually have the disease but the man that I have been dating for a year and a half does. I have the same struggle as many partners do. I feel helpless and when he does not call me when I am not there or when he can’t hold me or touch me when we are together I get frustrated. We have talked about marriage but I am afraid that I will lose him. I have told him I am not going anywhere but sometimes he retreats and it scares me. I’m not sure what to do.
Just keep being yourself, that's all you can do. And know that even if he's being silent, and he seems distant, he still appreciates that you're by his side. Even sitting in complete silence.
And if he lashes out at you, that is normal and please do not take it personally. It's worth it for their health if they lash out at you, because the alternative it to lash out at himself, so sometimes you have to take it on their behalf, for the sake of their health. It's not fair, and it's not fun, but it's just the way it is.
This condition is very cruel, and not only is it very painful, but we who are in pain also live in constant fear. I realize you feel scared, so imagine how scared he must be. Your support means more to him than you'll ever know.
And marriage is "in sickness and in health", so that's something to consider if you're talking about getting married. This might be what Dan Savage calls, "the price of admission", meaning that this is something you'll have to accept as part of your life together.
On your profile you mention that he takes meds but doesn't want surgery. Since he's atypical, there really aren't many surgical options out there for him. So he needs to try different med combos until he finds the right one.
My partner says that "we" have this condition, not just me. And he says it's "our" problem to solve. He goes to EVERY appointment with me. This means more to me than he'll ever know.
Please feel free to message me at any time. It's a hard condition, and you are probably going through the five stages of grieving. But once you both find acceptance, you can have a healthy relationship, perhaps even stronger than the average relationship, because most people don't have to face things like this.
Stay strong. And finally, don't forget about yourself. It's very hard on the caregiver too. So whatever it is that you need to do to get by, please do it. Don't feel guilty if you have to leave for a bit to take care of yourself. He'll understand.
If you love him, you both must adjust. Its not easy but not impossible. Therapy?? It can work.
That was Fab Crystal. I asked my partner to understand some of the medical jargon. He goes on all appts. Therapy helps us a great deal. Just hang in there. This is a tough one.
crystalv said:
Just keep being yourself, that's all you can do. And know that even if he's being silent, and he seems distant, he still appreciates that you're by his side. Even sitting in complete silence.
And if he lashes out at you, that is normal and please do not take it personally. It's worth it for their health if they lash out at you, because the alternative it to lash out at himself, so sometimes you have to take it on their behalf, for the sake of their health. It's not fair, and it's not fun, but it's just the way it is.
This condition is very cruel, and not only is it very painful, but we who are in pain also live in constant fear. I realize you feel scared, so imagine how scared he must be. Your support means more to him than you'll ever know.
And marriage is "in sickness and in health", so that's something to consider if you're talking about getting married. This might be what Dan Savage calls, "the price of admission", meaning that this is something you'll have to accept as part of your life together.
On your profile you mention that he takes meds but doesn't want surgery. Since he's atypical, there really aren't many surgical options out there for him. So he needs to try different med combos until he finds the right one.
My partner says that "we" have this condition, not just me. And he says it's "our" problem to solve. He goes to EVERY appointment with me. This means more to me than he'll ever know.
Please feel free to message me at any time. It's a hard condition, and you are probably going through the five stages of grieving. But once you both find acceptance, you can have a healthy relationship, perhaps even stronger than the average relationship, because most people don't have to face things like this.
Stay strong. And finally, don't forget about yourself. It's very hard on the caregiver too. So whatever it is that you need to do to get by, please do it. Don't feel guilty if you have to leave for a bit to take care of yourself. He'll understand.
I’m having a similar issue, except my husband is having tremendous difficulty with my new ATN diagnosis. I believe he feels powerless, even guilty(?) that he can’t make it go away. And so he is constantly angry, irritable, and withdrawn…and to lessen this, I minimize the constant pain I’m living with, as well as the extreme episodes that are happening throughout most nights, giving me 1-2 hrs of rest at most. Thankfully I stumbled upon this group, and I’m beginning to have a little hope. If others have adapted and overcome, I believe its possible for us as well:)
y boyfriend of the past year has the same complaints and concerns as you. I tend to withdraw and wish to be left alone. I know it is so frustrating for him. I have contemplated ending our relationsip because I feel like I am cheating him.