I'm sure it's not just Crohn's disease...most of the things I'm itemizing are probably things most people with a chronic disease have felt. In all fairness, it's only been four months since I've been diagnosed ("only"? It seems like a lifetime some days)and maybe some of these things will change or become easier, but I can't see that now. And some of the things you can't put a price tag on are the hardest.
1)I have less time with my husband.
Because he's been picking up odd jobs to pay for my meds, I see less of him. And he's more tired when I do see him.
2)I'm never going to feel pretty again.
Seriously, I spend three times as long as I used to getting ready in the morning, just to feel normal. It's not just how I feel-I was going through some photos my husband took from a recent day trip to Charleston and I look...colorless, dull...like a dead fish really. "Like butter spread out over too much toast" as our friend Bilbo Baggins would say. If I'd known this was how things were going to go, I would have just gone ahead and sold my soul for the dream wedding dress, because it would be really nice to at least have memories of feeling like a princess.
3)I'm never going to feel comfortable in my body again.
(Very closely related to #2) My body has both failed me and attacked me...I am living inside my worst enemy.
4)It's yet another reason not to have children.
Both because I'll automatically be considered a high risk pregnancy and because of the possibility of passing the disease on to another generation.I'd have to actually talk to medical providers, but it's likely that I wouldn't even be considered a candidate for a birth center or home birth. You shouldn't breastfeed on the meds I'm presently taking, other Crohn's meds can cause birth defects.
5)My possibilities are limited.
I went from "I can do anything with my life" to "I can do anything...as long as it includes really good group health insurance and there's a gastroenterologist nearby." I'm naively still planning to do my dissertation research in Belize....without thinking through how I'm going to make sure I have meds onhand for six months and what will happen if I have to be Medivaced out. We'll see how that goes...I'll have to have a long talk with a couple medical providers, at least.
6)I have to balance my health and my quality of life.
My doctor says I have to take two giant monster pills three times a day.
According to the books, I shouldn't have my caffeinated tea, my glass of wine, pomegranates, raspberries, strawberries (my favorite!) or anything else with insoluble fiber. This doesn't work for me. Sometimes I choose to actually enjoy my life, and I wind up feeling crummy.
7)I'm less available to my friends and family.
A good chunk of my "free" time this past semester has been spent having blood drawn or in the doctor's office. Then, there's the amount of time and energy I've spent processing and dealing with this emotionally/physically/financially/whatever. Some days it takes a lot more work to make myself be a decent human being than it used to.