Crohn’s Disease is an incurable, chronic inflammatory condition that affects your gastrointestinal tract. Basically, stomach problems galore. It affects about 5 million people worldwide, so while this post won’t be of any relevance or interest to most readers, it will hopefully be helpful to the small amount of people who are affected by Crohn’s Disease or love someone who is affected. Here are 16 things you should know.
1. When we’re happy, we’re really, really, happy. We’ve been through some rough patches, and we know they usually come back around. So when we are actually feeling good, light, and carefree, we soak up every minute of it.
2. We don’t take our health for granted. Once we’ve found a medicine or treatment that works for us (even if it’s just temporary), nothing makes us more thankful and joyful than feeling okay and being able to leave the house. Remission can be fleeting, but it’s still amazing.
3. If we tell you we can’t eat a certain food or go to a certain restaurant, just trust us. We’re doing both of us a favor.
4. We can actually be relatively pleasant when we come down with a bad cold or some version of the flu, because those things are like a walk in the park compared to a flare-up.
5. …But you should also know that we catch colds all the time because our immune system sucks. So we’ll probably beg you to come get a flu shot with us every year, and we’ll drink Emergen-C on the reg.
6. There are always certain go-to things that help ease our discomfort when our stomach is acting up. Sometimes it’s a favorite comedy series we’ll watch over and over, sometimes it’s music, sometimes it’s a favorite pair of pajamas. But it’s always a thousand times better when you’re there, too. You don’t even have to do anything. We’ll always feel a little better simply because of your physical presence.
7. We want to be spontaneous, exciting, adventurous. But our situation also requires a lot of planning. We’d love to go on a road trip with you, or book a last-minute flight to visit your friends, or go to an outdoor concert. We just need you to be a patient while we work out the necessities we must have to feel comfortable – food options, medicine, back-up medicine in case the regular stuff doesn’t do the trick, and the very sexy activity of mapping out restroom options.
8. We’re tired a lot, sorry. Fatigue is just part of Crohn’s. We don’t let it keep us from living life or doing exciting things. We’re just super tired while doing those things.
9. …Unless we’re on steroids. Then we’re pretty much unstoppable. You’ll grow to have a love/hate relationship with Prednisone – it makes us feel great, but we also have more energy than a squirming toddler.
10. This disease is isolating. It’s not a super well-known condition, it’s not something we enjoy talking about, it’s awkward to explain to coworkers why we’re ‘always sick’ and running out of meetings, it’s the butt of a lot of jokes (no pun intended here, but damn it worked well), it’s constantly getting in our way. So usually what we need most from you is just to feel like we’re not alone.
11. We’re almost never in control of our own body, so, heads up: we usually have control issues in general. You’re welcome to call us out on it, but give us some leeway – it is, after all, an ongoing battle.
12. We know you deal with a lot too. We can be moody, unpredictable, stressed, frustrated. Once in a while we’ll have a meltdown, particularly during flareups. Just know that your support, comfort, and reassurance is never forgotten or unappreciated. Much of the time, it’s what keeps us going.
13. We always have safety foods that don’t betray us. So if you’re bringing us home to your parents’ house and are worried about making us feel comfortable, one of the easiest things you can do is just ensure we have some low-risk foods to eat. It differs from person to person, but some common favorites are eggs, apple sauce, grilled chicken, and oatmeal.
14. Don’t let us get away with anything. While your care means more to us than you’ll ever know, we don’t want you to ever feel like you have to walk on egg shells around us or always let us “win.” On the contrary, we want you to continue to challenge us, encourage us, and expect more out of us – it’s the only way to make sure that Crohn’s is just a condition we have, not who we actually are.
15. You’re going to have many moments where you’ll just want to fix everything for us. You’ll desperately search for a way to make it all better and to keep us from pain. Accept right now that you do not have that power. What you can do is be patient, loving, encouraging, light, optimistic, and reassuring. That’s more important to us and more powerful than you even realize.
16. It’s not really about understanding how we feel, it’s just about accepting the fact that you don’t understand. Acknowledging that you don’t fully get it, but that you’re here for us anyway, is all we need.