Aleksey Dumer's post really hit home for me. I was diagnosed with Crohn's Disease when I was about 14 and now coming up on my tenth year of diagnosis I can definitely see the changes I went through with how I was able to deal with the disease through the years.
To start, I say ten years of diagnosis because I know I was sick for a few years earlier. But being young and probably very awkward, ok who am I kidding I was an awkward tween, I didn't want to admit to the fact that I was sick. So instead I just sucked it up and went on feeling like crap when I was playing with my friends. For all I knew they were feeling the same way. No one else was saying anything why should I?
Eventually when I hit my teens I realized that this was much more than I could handle on my own and went to a doctor. Oh maturity. But still even with a diagnosis and treatment plan it took me years to accept that this was something I would have to live with for the rest of my life. How do you tell a 14 year old that they can no longer eat most of their favorite foods? Girls have enough body issues at that age. I was told I could never drink before I was legally allowed to touch alcohol. It was a lot of stress for a kid and looking back my adolescent angst makes a lot more sense. At the time though I just went the always applicable "I don't care."
Aleksey makes a really good point when she says that it's not just about the patient or the disorder but also the outside factors. I had a very, very supportive family. My mother learned how to cook amazingly well with completely new ingredients. My brother and sister understood that sometimes I would just be feeling really crappy and to leave me alone. My mother explained to me that even though I hated taking the pills prescribed to me I still had to. (We even had an experiment where I went off them, wow those were an unpleasant couple of days. It's sort of like when a parent says ok you wanna smoke, smoke the whole pack! Yeah I never went off my pills again)
Meeting other people with Crohn's has helped me realize how lucky I am. Some people have no clue what they're doing and don't have anyone around to help them out. So yeah Aleksey, as someone suffering from a chronic illness, specifically one that hits you at a young age, I think that making psychology visits mandatory or at least highly suggesting them is an excellent idea. I can't speak for those patients diagnosed older, maybe we can assume the older you are the easier it is for you to accept major life changes. But I think for a child, who is already going through so many "life changes" (cue cheesy 70's sitcom music here) having that disrupted by an illness makes it much more than just medical.
Comments (1)
What you say makes a lot of sense for a child who's old enough to understand explanations. But how do you tell a one-to-three year old that you can't play with lots of other kids, who might be coming down with colds or other minor problems, because your immune system is compromised, and will probably be better by the time you're old enough for regular school? My middle grandson was in and out of the hospital during those years, mostly just for outpatient chemo treatments, and his chief playmates were his brothers, whom he still saw at home, so he didn't actually have this problem, but could have. (By the way he's fine now, and only has to come in twice a year for CAT scans, to show that things are clearing up nicely and there's no relapse.)
Posted by Lucy | December 10, 2007 3:11 AM
Posted on December 10, 2007 03:11