Chronic disease is hard. That’s one of those statements that everyone knows, but I just need to say it out loud. It’s especially hard on the patient, but it’s also hard on everyone else in “ripple effect” distance of the patient. ***Side note, I actually typed “victim” instead of patient a minute ago and had to delete it because that wasn’t what I meant, but it’s basically how I feel.
Crohn’s is such a mean disease. It doesn’t care if it’s Sunday night with your work week ahead, or Friday afternoon with your whole weekend planned. It doesn’t care if it’s Christmas or Easter or your birthday or your anniversary. It doesn’t care if you have 3 kids and a wife and the yard needs to be mowed.
Crohn’s doesn’t care that you have to take time off work for doctors appointments and lab work and infusions and hospital stays. So much so, that you can’t take off work for the stuff that matters, like your kid’s field trip or career day or vacation with your family. Vacation days with a chronic illness are spent 2 and 3 days at a time, at your local hospital, hooked up to IVs, having scans and other tests, and fighting through the pain and nausea, not at the beach or in the mountains.
Crohn’s doesn’t care if you’re tired and weary from the endless cycle of not eating and being sick. It doesn’t care that you couldn’t sleep last night because you were throwing up all night, or rolling around in pain for hours. It doesn’t care how many pills you have to take each day, or how many hours you sit in an infusion chair. It doesn’t care that you have to decline certain foods – foods you used to really love – because they’ll surely send you over the edge.
Crohn’s doesn’t care that all your strength is used to put on a brave front for everyone else, and that when you get home, its all you can do to climb into the recliner for the night. It doesn’t care that you order food and push it around your plate at dinner so it looks like you’re enjoying yourself with everyone else. It doesn’t care if you’re about to eat your favorite meal, or if you just did.
Crohn’s doesn’t care that you’re emotionally exhausted. It doesn’t care that you’re worried about the medical bills. It doesn’t care that you bite back tears in front of your wife, or if you can’t hold them back in front of your mom. It doesn’t care that your wife tries to quickly swipe tears away so she looks brave for you and it doesn’t care that your kids ask if you’re in the hospital again.
Crohn’s doesn’t care that its picking away at all the things that make life easier. It doesn’t care that each spouse struggles with dealing with the disease. It doesn’t care that feeling bad makes you short and curt and snippy with the ones you love most. It doesn’t care that your wife is struggling to hold it all together. It doesn’t care that your wife yells a little too much because she’s a little too stressed. It doesn’t care that she sometimes gets in the car just to shut the door and scream and cry and beg God for mercy for her husband. It doesn’t care that they desperately long and hope for healing. It doesn’t care that they feel like they’ve taxed all their friendships and relationships asking for favors and accepting help. It doesn’t care that your wife brings your 8 week old to the hospital to visit you or that the nurses bring graham crackers and juice and popsicles for your boys.
Crohn’s shows no mercy and is horribly unpredictable. It is strong and persistent and ruthless. It is totally and utterly exhausting. It is belligerent and cunning and attacks when you least expect it to. It doesn’t care how many times it humbles you.
Crohn’s just doesn’t care.