Hi Runningirl,
It took me years to learn to deal with my family. It wasn't only lyme disease, but also during the years that I was a drinking alcoholic. So I always had problems with my family including brothers and a sister, aunts and uncles. I was always the "black sheep" in my family at a very young age, perhaps because I was the rebellious type and didn't buy into their views.
I learned to "accept" my family for what and who they are. That was very difficult for me to do. Just to accept and not to "expect" anything from them. When I used to expect support or understanding, I would set myself up for disapointment and feeling so very hurt.
I looked at all my family members (especially my parents) and looked beyond.. I looked at how my mother was brought up and saw that she never had any love, affection, or understanding from her own parents thus I became to understand why my mother is the way she is. My Dad was nicer to me and even though he didn't understand lyme, he was more compassionate compared to my mother.
I didn't feel so much anger, I think I felt more hurt. I wanted my family to understand sooooo much and I would talk to them but it didn't help. All my mom kept saying to me was work harder, snap out of it, or she would just criticize me. I remember a time when I deliberately distanced myself from family for many months and just focused on myself. Those months were very difficult for me and I think that's when I learned that I just had to accept people as they were including friends that also "didn't get it".
We can not change others, we can only change ourselves. We can't force people to understand or show compassion, but we can learn to accept them for who they are.
I feel for you and like you, my family also thought I was a "head case" until I got better. Guess what? To this day, they still don't have a clue about lyme disease. And I don't even bring it up because I know they just don't get it unless they contracted lyme themselves, then they would ask me a zillion questions...
I believe your family really does love you but they just don't know how to handle your illness. Many people don't know how to handle it. Why that is, I have no idea. I have been there for my family no matter what illness they have had or have. Yes, it's sad that they weren't there for me but once again, I can't change my family and their views.
I guess it all boils down to "choices".. I had the choice to be bitter and angry or the choice to just "accept"... Accepting was and still is more positive for my frame of mind. Better than feeling hurt, right?
Well, you have us and this forum to vent whenever you feel like. I used to vent like crazy about my family in a different forum I belonged to when I was sick.
I hope this helps and know that I do understand where you are coming from and yes, the fact remains is when we don't have people to support us, it just plain hurts.
Hugs to you,
Denise