Romantic Partnerships
Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?
Most definitely. It has affected my relationship. I broke up with My fiance I have server called dystonia. And it's getting bad and I don't think it's fair to put someone through that.
, did you get any relief from the Botox? Would your doctor be able to help you find and transfer your care to an amenable doctor in your new location?
I found myself wondering, too, if DBS could help - I'd only ever heard of it in relation to Parkinsons - and it looks like that is a possibility. Would he be willing to refer you to a neurologist to evaluate if you are eligible? - Warmly, Donna (Team Member)
I'm so sorry you're going through that and even with feeling that you needed to end your relationship, that is still a difficult and painful decision.
I've been married 35 years to a great guy. I mean we've absolutely had our ups and downs for sure. He does, now, appear to be afraid to have relations with me because it might fire off an MCAS attack. (it does sometimes) We've talked about it repeatedly. It's just going to take time to allow him to process this relatively new diagnosis. I can't blame him. It's just with pots and MCAS there's a whole host of symptoms. I have to let him go through this in his own time. We've stayed together through my near death experience having my daughter, military deployments, ECT. We'll make it through this I know he loves me.
Oh yes it is a lot. I started counseling about 13 years ago. Then my family sought out counseling. It was good to see them (I have adult kids) reach out for help.
LynOh I'm so glad that you and they did that! I wish my parents and I had received family counseling, I did finally agree to attend individual counseling as a teen but I think we really would have benefited from family as well.
I have multiple rare and chronic illnesses that impact my life in a variety of ways including painful intercourse. Unfortunately (or fortunately), mine caused me to get a divorce because my husband expected me to still do everything with and for our two (also disabled) children after my illnesses started showing symptoms. He made me feel guilty about not being able to have sex and said that was why he had a porn addiction.
, wow, I'm glad you didn't let him deflect his bad behavior onto your illness. I hope that you and your children are thriving in a loving environment. - Warmly, Donna (Team Member) That's so awful that you experienced such untrue blame and lack of understanding and support. You didn't deserve that. I hope you're in a much better place now mentally, physically and romantically 😀
The boyfriend I was with when I got sick aren't together anymore though we are friends. I admit my behavior wasn't great but there wasn't enough room for me and his overcare of his family. (I'm not knocking the care of family but he thought he was responsible for everyone. I know his youth impacted this. He doesn't have kids either)
But my forever person has chronic illness too and we take care of each other and have great empathy for our struggles., I love that you call him your forever person. Reciprocity is an amazing gift! - Warmly Donna (Team Member) I think that's so great that you ad your previous partner are still friends and it just goes to show that relationships ending are the end of the world and typically are for the better to allow for a even better suited, true partnership to be found.
