I’m brand new to this website, so I don’t know if I’m basically talking to a wall here. But even walls can be therapeutic.
Short story – my 27 y/o girlfriend has recurrent non-Hodgkins lymphoma (B cell follicular) and the cancer is actually the lesser of two evils. Last fall, she was also diagnosed with a very rare, very serious genetic condition called Ehlers-Danlos Syndrome (vascular). The two diseases make quite a tag team; basically every part of her body is affected, head to toe. A combination of factors pretty much guarantees that she won’t live to be 50. Even 40 is a longshot.
Needless to say, dealing with both diseases has been an enormous struggle for both of us. But out of all the challenges we’ve faced, I think the most surprising one is how much we’ve both been abandoned by family/friends. Her family has generally been supportive to her, but many of her friends have slowly distanced themselves from her. A couple of them even told me that they’re frustrated she isn’t the person she used to be (i.e., she doesn’t party as much). Some of them say all the right things (“I’ll always be there for you”) but when push comes to shove, they bail.
As for me, my family/friends treat her health as the elephant in the room. If I bring it up, they just kinda look the other way as though I didn’t say anything. The biggest shock to me is how her family has not reached out to me at all. We live in Chicago and they live in Ohio – so they’re reasonably close, but far enough that I’m her primary support. Pretty much her only support in Chicago. Her family should know that it takes a network of people to support someone through cancer, yet they've never reached out to help, not even to ask me how things are going.
I’ve read that this is a common occurrence because many people freak out when someone they know and “care about” has cancer. But I’ve never spoken to anyone who can relate. Anybody else have similar experiences?