Reply to Feeling so blue...How to live with DD's chronic illness?

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[quote=Anonymous][quote=Anonymous]OP, your daughter has a chronic medical condition.  It may be lifelong, but every medical condition has remissions and a course that includes good and bad phases. She is in a particularly rough phase right now.  That's very hard.  I'm so sorry.

I agree with the posters who say that, as close as your kids are, the younger child must have a social life that does not include the older child.  Send younger child to camp still if you can, or find an activity.  This is really vital.

It's not selfish to feel that the pleasure has been sucked out of your life.  That's a natural feeling, not a selfish feeling.  Your life has fundamentally changed.  But there are vacations to be taken and you will take vacations as a family.  Renting an apartment at the beach for a week sounds like an option.

It seems to me that you would benefit from joining some Crohn's Disease Support Groups.  Your daughter may not have been diagnosed with Crohn's but many of the tips for how to live in the world with bowel urgency and how to vacation are going to apply.  One thing I have learned is to join a wider network of support.  If there is good support for one aspect of my child's condition in another support community, I go there.  You should do the same.

Many children don't have a diagnosis. It's a hard place to be but it's more common than you would think. It's probably contributing to your depression and keeping you in that limbo place.  Ignore the posters who are quizzing you on her condition.[/quote]

I was also going to suggest that you and your daughter join an IBD support group, because those with UC and Crohns face very similar issues.  I was diagnosed with Crohn's in my teens and I relate to how your daughter feels.  I went through a period where I did not want to participate in anything because I was so worried that it would be disrupted by an episode.  My parents indulged it because I think they felt the same way (out of protectiveness of me).  Joining a support group was great - I felt understood and free to share my worries, and I received lots of support and tips for how to navigate and maintain a regular life.  It was so liberating and while my disease is auto-immune, like all body functions it is influenced by stress, so relieving some of my stress did slightly help the condition as well.

As an adult, I still am a member of the Crohns and Colitis Foundation, and I know they facilitate support groups, online and in person, and camps, and teen workshops, etc.  Your daighter's GI may also know of some for tweens/teens at area hospitals.

GL. [/quote]

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