I don't have MS, but I certainly can relate to being left and with no one being interested in learning about the disease process.
In 2001, I had a hysterectomy, cystocele and rectocele repair and bladder suspension, and my boyfriend of six years decided that three days before my surgery would be a good time to leave. I think it was the emotional loss (as well as the monetary loss since he contributed to the bills) that hurt the most. Fortunately for me, I had two great friends and an aunt who had keys to my house and would stop over all the time to see if I was okay. (I felt okay, but stupid little things, like removing an ice cube tray from the freezer, were difficult in the beginning.) So I can relate to being abandoned and the hurt it can create on so many different levels. I'm really sorry that happened to the OP. 
I live with my daughter now, 2,500 miles from my "home," where I was born and raised. (Ironically, she takes Provigil herself!) Now that I've been diagnosed with cystic fibrosis, my daughter absolutely refuses to discuss it with me. She has called me "lazy" during some of her angrier moments, which hurts more than I can express in words and just adds to my own sense of worthlessness. She's aware this disease is fatal, and at first it seemed like she simply didn't care, so I've stopped trying to talk to her about it. Every now and then, I do mention something in the form of a "what my body's doing now" joke (for example, when "goofy" or "weird" things happen with my body, I look to see if these are components of CF, and nine times out of ten, they are.)
It's easy to write these things off as someone simply not caring; however, I've wondered lately whether the real reason is self-defense. Maybe holding someone you love at arm's length and acting aloof is their way of preventing the emotional pain they might feel if they truly accepted the fact that you have a serious disease.
(Or, as in the case of my boyfriend, they're just plain creeps!)
My daughter and I did have a discussion regarding my death just last week. (At this point, I'll continue this line of commentary under my response to "Me," since I think it's highly inappropriate to include in this thread! Many posters on this board are married and not alone, but for those who are alone with no life insurance, please read my "P.S." post above.)
I personally am grateful for boards like this because sometimes, it's the only outlet we have to just vent or to ask questions.
I know there are CF and Pancreatitis boards on the internet. I've learned quite a few things from reading posts on these boards, and I've found that finding a community of people with the same disease is very helpful because they DO understand the disease process and what you're going through.
I wish good luck and the very best of health to both of you. I will keep you in my prayers. |
Not interested or understanding - Marmann
