When you have a chronic disease, like Crohn’s, you hear some pretty crazy things. Here are some that have actually been said to me. For real.
I just had the flu so I totally understand what you deal with! (Yea, it’s just like that only different)
My friends mom has that and she’s fine. (Good for her)
You don’t look sick. (Thanks?)
So, what can you eat? (Do you mean today?)
What exactly is crohn’s? (Asked at the dinner table)
Are you really going to eat that? (Was going to)
(After a long bathroom trip) What were you doing in there so long? (Just sitting on my ass)
Are you just in the bathroom playing on your iPad? (Yes, the toilet is just so comfortable and I especially love it when my leg falls asleep, fun)
This is important to me, please don’t bail. (Well in that case, I’ll make my guts do what I want)
You’re not a very good friend, I mean, you are sick all the time. (Thanks, I wasn’t feeling crappy enough as it was)
Can’t you just have surgery? (Maybe getting inches of gut cut out doesn’t sound bad to you)
I get an upset stomach when I eat spicy foods, do you think I have crohn’s? (You should probably get a scope, they are fun, ugh)
My doc said I have crohn’s and I feel great, I don’t understand why you don’t? (I should see your doctor, he must have a magic wand)
OMG, I’ve heard of that! You could die from that! (Whoa, hope not!)
So, why isn’t there a cure yet? (When was the last time you raised money for IBD?)
Can’t you wait until we get home? Just hold it. (Do you really want me to poop my pants? In your car? Really?)
No big deal, everyone poops, right? (Yep, I just do it a dozen times a day)
I just take Motrin for my PMS cramps, have you tried that? Maybe that would help. (Good idea, it’s not like I haven’t tried every med out there already)
You take steroids? OMG, you’ll get all buff! (Nope, just get the ‘roid rage, grrrrrr)
Why don’t you just get some sleep? (Why didn’t I think of trying that?)
You have to go to the bathroom again? (While pausing the movie, again)
You can go, there are bathrooms there. (And all bathrooms are equal)
How can you be a good parent when you are so sick? (Hey, my kid loved having stories read to him in the bathroom)
Can’t you just take medicine? (More than the handfuls I already take?)
You know, you can’t expect special treatment. (Gee, really?)
You were in the hospital again? What for? (Just taking a little break, thought I’d have a little spa week. They wait on you hand and foot, especially after you ring for them eight times. The food is indescribable and I love sharing a room with a stranger. You should try it!)
Can’t the doctors do anything for you? (I’ve never asked)
You better not overdo it. (Just waking up today hurt)
You can have just a little, right? I mean, it won’t kill you! (Says the person who won’t be up all night in the bathroom crying)
You cry in the bathroom? Why? (No, of course I don’t cry. You can’t prove it.)
You make it out to be such a big deal. (Usually said by someone you haven’t talked to in weeks)
You know, when you get sick, it’s hard on all of us. (Like that ball of guilt will help?)
You can go, it’s just at their house. (And its always comfortable to ditch a small gathering for a half hour and kill another persons bathroom. Hope they have a fan, toilet paper, patience, sense of humor, everyone pretending you didn’t just do that)
Wow, you are still upbeat about it all! (Yes, I’ve found that kicking a toilet and screaming really doesn’t do anything good. Humor is my only defense)
My uncle only flares up when he’s stressed. (Either he is flaring all the time or he’s a monk)
Maybe getting crohn’s is a blessing. (Well, I do do a lot of praying – please please stop, I just want to rest)
When was your last flare up? (When have I ever not been flaring?)
You can’t have crohn’s and colitis. Only one or the other. (Really? Can you send that memo to my gut? Here’s the mail chute)
How do you handle it? (I don’t. It takes everything I have got to hide the pain, pressure, guilt, fear and anger I am feeling.)
You seem fine. (Then my acting has improved)
It will get better/easier. (When?)
Can we go on the trampoline? (The things we do for our kids!)
Yes, crohn’s suck. Any disease that causes pain and discomfort is horrible. The guilt alone that we face when we feel we are imposing on someone or causing disappoint eats us up. Like the disease. A good attitude really does help. (Insert eye roll if you’d like, but it really does)
When I was first diagnosed, I really lost all hope. I was sick non-stop for months that turned into years. It wasn’t anything like my mom’s crohn’s; or your aunt’s, his mailman’s, her dog. It was living hell. Trying a new medicine every couple of weeks only for it to fail and my hope would fall further. I spent so much time in the hospital, I knew which vein could last more than 12 hours, I knew the tricks for getting the better night nurse, heck, I could have set up my own IV and med machine. In fact, I already could disarm those blasted alarms. What I couldn’t do, is know what worked. What could I eat without dying afterwards? Why did action “a” only sometimes equal reaction “b”? It changed every flipping day. I swear, crohn’s is this spazzy little kid high on sugar bouncing from one thing to another, tearing down the walls and cackling. I’d go left, it went right. I’d make a play to get a handle on it, it would duck and hide. I could run, but it always caught me. It could run, and I’d never get close. It felt like I was battling myself in some epic sci-fi war where only one of us would come out alive.
Some nights, I let the crohn’s win. Some weeks it would win. I got depressed. I got angry, at myself. I was disappointed, in myself. I felt ripped off. I wasn’t sure if I wanted to live a life with crohn’s. Then, I would turn it around and feel strong and feisty and ready to fight. Repeat and rinse.
Everyone said it would get better. I’d understand it more as time went on. I’d get it under control. After a few years, I still didn’t believe these Pollyanna types. Then, it changed, just a little.
I finally understood. Crohn’s Disease is only two words; not a sentence. It was some I had, it didn’t have me! I could beat this thing. Then I would flare and doubt would sink in again.
This would go on and on until finally the remission times between flares would be just a tad longer than the last time, allowing me to get that much stronger than before. Finally, I might be feeling pretty good for a couple months at a time. During that time, I’d have a positive attitude and feel like I won. When I flared, it would take more than a couple bathroom trips to knock me down and even then, it wouldn’t put me completely out of the game. Time did go on and it really did get better.
My crohn’s didn’t ever really improve. Sometimes a medicine might work or I wouldn’t flare for as long or as often but it basically stayed the same. It hated my guts and I wasn’t too fond of it either. However, the way I looked at it, my disease, did change. I couldn’t let it define me, control me, beat me.
I make jokes, like most crohnies. I deal with other auto-immune disease, like most crohnies. I struggle and adapt and keep moving one foot in front of another, like most crohnies. I research it more than any doctor I know, like most crohnies. I know medicines better than a pharmacist, like most crohnies. That’s when I understood, I’m just like most crohnies….except what works for you, might not work for me and vice versa. But we will try anything. Us crohnies, are a gutsy group.
So, keep your chin up. Face this flare up with smile. Sit on your comfy toilet (isn’t it sad we know toilet brands and features as well as a plumber? Oh, I do love the extra tall ones, and your seat is much nicer than my current one) and get stronger. Use humor when you can but cry if you have to. You do deserve special treatment, only it’s up to you to give it to yourself. Don’t overdo it, and don’t feel you have to explain yourself to others. If you can’t do something, just say that. Don’t feel you have to give reasons or excuses. You just can’t or don’t want to. Let the other person deal with it. Eat what you want when you can. Enjoy your life in any small segment you can. Even the worst crappiest days ever, can be dealt with if you don’t pile on the self guilt. It’s hard but I think that’s what people mean when they say it gets easier. The disease stays the same, gets better, gets worse but how you look at it and deal with it, does change.
Stay positive (when you can) and go kick your own ass!