I completely understand your frustrations.
I am 28 and was diagnosed at 18. I was pretty much an adult when I got sick so my parents never had to try very hard to understand much. Now I live 1,000 miles from them, and when they come to visit I get so frustrated. I have been trying to tell my mom over the phone about my latest flare (6 months worth of weight loss, steroids, and liquid diet) and she just changes the subject. It's almost as if she doesn't know how to deal with it or what to say...I know it's hard for her, but it feels like she's downplaying the severity of this. Just recently my family was visiting and my grandma even said, "You're so skinny!" and I said, "yeah, I've been sick but I'm getting better. I'm starting to gain it back." Then like 5 minutes later she commented, "you must be so skinny becuase you are so active." WHAT? Did you JUST hear me? Did you forget that I'll never be well? It's so frustrating.
I try to rely on my friends and some of them try hard to understand, but as somone else said, how can I expect them to understand something I can't even figure out? My best friend said he'd be here for me no matter what and said I wouldn't have to deal with this flare alone, but then 4 months into it he basically blew up at me and said, "i'm not your mom, I'm not your guardian...this is too much for one person to take." and basically told me he needed a break from me because he didn't want to deal with me being sick and all of the depression that goes with it.
I've given up trying to find a relationship becuase I just don't believe that I can force this on anyone else. People try to understand but they just never will.
Yes, flowery, it is incredibly frustrating...sometimes like screaming at a brick wall.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas.
Currently on: 30mg Prednisone (Tapering from 60), 100mg Imuran, Align, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Flomax (for urinary retention).