Hi Laurie,
In 1991 I had a non-malignant brain tumor. it was not an AN, but it was right in the center of my brain in the third ventricle. I had the same response from people. I think that "brain tumor" sounds so scary that people often do not know what to say, so instead, they skirt the issue or tell you about stories that happened to people they know. It is very disconcerting. At the same time that was going on, I had daughters in high school who kept asking if I was going to die. I felt like I had to be strong for everyone, including my aging parents. I wanted someone to be strong for me. Even my then husband, a physician, could only see it in black and white and did not understand the emotional roller coaster I was experiencing. I wish there had been a forum like this.....of course in 1991 the internet was not quite the same.
My SSD is not from that tumor and I never did have an AN. It was a sudden onset hearing loss....idiopathic sensorineural hearing loss. That was in 1998. That has also taken quite a lot of adjustments. People don't seem to understand the stress that goes with that or the worry and concern as well. You are in the right place. This kind of input and support from other who have gone through or are going through the same thing is so important. It is a scary time, and here you have others who share that experience with you. You will never be able to change those around you or "make" them understand. It is so frustrating. But, so glad you found this site. It should help you a lot to feel supported, understood and accepted!
Dale
