Crohn’s Disease Is Something You Have, Not Something You Are

You are not Crohn’s Disease. You are not an illness or a statistic. You are not a success story or a sob story. You are not a weakness or an embarrassment or a disability. You are not a joke. You are not a body that sits in a hospital room, waiting for a doctor to come in, to look you over without really seeing you, to assign one more medication to you.

You are a person. You are a person who has a chronic illness. You, yourself, are not an illness.

It can be hard not to become the disease, especially when you’ve spent countless hours having to explain to friends and coworkers and bosses and significant others why you can’t come in to work today or why you can’t go out tonight or why you can’t make it to their birthday celebration.

When a significant portion of your life is focused around Remicade infusions or Humira injections or a Prednisone trial or just finding something that will work – even just for now, so that you can leave the house – it can be hard not to completely associate yourself with the disease. It can be difficult not to base your entire identity around this illness.

You want Crohn’s Disease to just be another something about you, like your hair color or your height or your age. You want it to be a careless fact – I’m blonde, I’m 5’3, I have Crohn’s Disease. But it can be hard to tack it on as just another thing about me, when you’re spending such a significant amount of your time worrying about getting sick in social situations and finding food that doesn’t make you ill and stressing out about traveling and scheduling multiple doctor visits into your busy weeks.

Sometimes, there are steady periods where you can forget about it for a little while. Not completely, but at least to the point where you can go out without needing an escape plan, where you aren’t thinking about Crohn’s the minute you wake up. These are beautiful, brief oases that give you time to think about the disease, to process it. You wonder how you could have ever been that caught up in the illness, you question if maybe you were just being a little bit dramatic.

And then the flare-up comes back, as it always will, and it’s really all you can think about. Your days revolve around food, or a lack of desire for it, and sleeping, and bathroom breaks, and excuses. Fake reasons about why you have to leave work or the party or the event early. Sleepless nights and wanting-to-sleep-all-day days.

These are the moments where it is so easy to become the disease. It takes up such a large space in your mind, because of the worrying and the planning and the anxiety. Often, by accident, this illness becomes the only thing from which you derive your sense of self.

When I feel this starting to happen to me, I try to remember what what my doctor told me 9 years ago, right after I was diagnosed: “You have Crohn’s Disease. Crohn’s Disease does not have you.” A cheesy statement, maybe. But real nonetheless.

Crohn’s often takes away your control. So you try to get that control back by finding a sense of identity within the disease. I was diagnosed this many years ago. This is how I deal with it on a daily basis. This is what I eat. These are my medications. These are the issues I have. These are my side effects. 

Crohn’s tries to trick you. Crohn’s tries to make you think that this is who you are. But what you need to remember is that you exist outside of this illness. You can find your sense of identity from who you are and what you do in spite of having Crohn’s Disease.

This is not to say you should walk around like a martyr, patting yourself on the back and informing everyone of what a warrior you are. Yes, your suffering is real, and at times it has probably been very intense. But everyone has issues, everybody has a cross to carry.

Crohn’s is one of your crosses, one of your challenges, one of your issues. It will probably be a steady companion throughout your entire life. Sometimes it will be in the background, sometimes it will be right in your face, refusing to be ignored.

Don’t try to avoid it. Do everything in your power to make it easier on yourself. Do everything in your power to take care of your body. Don’t try to hide the pain, just acknowledge that it’s part of your reality and keep going.

Refusing to allow Crohn’s Disease to become your identity doesn’t mean you have to ignore it. It is a significant part of your life, and you can form a safety net for yourself when you need it – discovering safe foods that you can eat, putting on your favorite show when you need comfort, getting extra rest when your body is exhausted, turning to people you can count on when you need to be encouraged.

The illness is real and it always will be. The medications are real, the side effects are real, the exhaustion is real, the flare-ups are real. But they are just the things that make up your cross. They are not you.

You are the person who’s living and creating and experiencing and doing and trying, in spite of the fact that Crohn’s is trying to pull you back. Some days you will feel weak. Some days you will feel strong. Some days you will feel mediocre, just somewhere in the middle. That’s okay.

What matters is just that you keep going, that you keep living, that you keep doing things that will help remind you that you exist outside of this box.

You have an age. You have a height. You have an eye color. You have Crohn’s. These are all just things about you. Perhaps Crohn’s affects you more than some of your other characteristics, but it is not you. It never will be. And as long as you can remember that, it will never beat you.