How do you "talk" about Crohns with your family/children?

My children are adults now. When I was DX they were in Highschool. They are home  for the Holidays, it always amazes me how time heals. It seems I always have to remind them of the "speed" I'm on...Crohns speed. They bring me gifts of sweet, with nuts, and I feel as if nobody in my family remembers what I can and can't have.  I don't want to constantly be bringing up Crohns and at the same time I "WANT" to depseratley be that old person I was. Sometimes, I think they don't even know what Crohns is...or how it effects my body. Is that rude, denial or lack of communication? idk???

I'm usually tired, low of energy and don't know if I should always bring up my daily rituals such as my many bathroom visits, diet, and just feeling resonable crummmy. They'll  say " Why are you so unhappy, MOm" ??? I'm exhausted at the moment and a feel as if I could sleep for 2 days straight and the Holidays aren't even here yet!  How does everyone explain to their children/family that they are ill. Like chronically. It doesn't go away! I feel my expectations are so high as a Mother and also, wishing I could do the things I used to...

 

God love my husband.  He sits in the bathroom with me when I'm doubled over in pain.  He cleans up after me when I pass out from the explosive diahrrea hits.  But when I say I can't eat salad because it's coming out of me like a salad shooter ... he challenges me and says I don't know what I'm talking about.  Coworkers keep complimenting me on how "good" I look these days 'cause of the weight loss.  They don't see the dozen trips to the bathroom everyday.  I think we ALL don't understand other peoples illnesses.  I don't know how you "fix" it.  Accept the sweets ... and bring them into the office and hope co-workers will enjoy them?  Throw them out?  I don't know.  Hugs ...

kia

   

Thank you and REGIFT/bring it to the office. And if they confront you about it then say well darling it was a lovely gift, but it was like giving taffy to the man with no teeth (like in that avert), so I pasted your gift on to someone who can really enjoy it without the damage it causes me. It makes you feel good to share the gifts of your children.

It is not that you are unhappy (or maybe it is, did you know that it is not good protocol to dx someone with a mental condition when they have a physical illness, because of how much it is just tiresome to have such a constant physical drain. Like when they have the stomach flu how much do they feel like doing? I think they should be complimenting you on your strenght, stamina, and just shear grit.

Sometimes people will just never get it, even if they become chronically ill themselves. Sometimes you have to accept the charater short falls of other human beings, because their are not doing it out of malicinious (or at least you hope they are not) they are doing it out of wishful thinking of hoping for you to be well.

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. 

I can soo relate to this. Sorry I"m not active on this forum, but linger. I soooo understand everyone here. I hate it soo much that no one understands, yet I'm so grateful that they don't cause you have to live it to understand. I don't even want to go to see my family on Christmas. It's more than just the food, its the constant judgement and questioning and same questions year after year, then no words til the next "season". I just don't think I'm going to participate anymore. The only one in my family who understands and really tries is my grandmother. She lives with me and sees what I go through on a daily basis. She also is allergic to gluten so she understands all the food issues. I guess one thing about this DD is that you start to see who really cares about you and how much care and concern each person needs whether in your family or those out there who have no one and are lonely. I guess I've gotten to the point that just because people are in my blood "family" outsiders can become more of your family than you could ever imagine and show more love and concern than those who you would expect to. So just because you don't see it in your own family there are people out there who will show you how much they care, maybe not today but one day.