I've had and extremely aggressive case of UC since the age of 16, I am now 28. I have had so many surgies I frequently just lose count. My family has been there for me a lot in the hospital, and has let me stay with them while I'm on disability and can't work. However, they have never been actively involved in learning about my disease and being there for me. Even as a teen, I was the only one trying to research my disease and doctors. It's weird, on one level they are there for me physically when I have an emergency. However, on another level, I have felt completely alone in this since I was diagnosed as a teenager. Am I wrong to want my family to take a little more interest in this? I don't understand... When I tried to express my feelings, they got defensive and acted like I was just being selfish. Maybe they are just so desensitized to all of this now, and it's too stressful for them to think about? Idk... I feel so sad about it though, and with my disability/health insurance situation, I still need to live with them. What can I do? Does anyone have a link, or something I could send to them to read maybe?? I can i revive my families empathy after about 12 years of surgeries and hospitals? Please, any advice is appreciated. Thank you
- Erin
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