What I wish my family and friends understood about Crohn’s disease

By Kathryn Polk

I have Crohn’s disease, and probably most people who know me are aware of that. That’s because I am not shy to tell people why I am not eating a salad or why I turn down fruit or nuts or why I don’t eat pork. Someone will usually make a remark about what or how I eat. I don’t care about any of that anymore — I just tell people where to take their comments.

Kathryn Polk

That’s not really the hard part of the disease anyway. The hard part is the completely invisible part of my disease, the one that nobody sees except my husband. And I shield even him from how much pain my body is truly in or how physically exhausted I am. I am starving, but it hurts to eat. And then I eat and I am bloated and in pain. Then I go to a doctor who tells me, in essence, “Take these insane infusion drugs for the rest of your life. They just have a million side effects and kill your immune system — no big deal.” Yeah, no big deal when it isn’t your body it’s going into.

So I go take this “miracle drug” and come home and feel miserable and exhausted. My body aches and I have a migraine and hot flashes and I am shaky and nauseous. I can barely make it to the couch or bed or a chair to sleep for the following six plus hours to try and feel like a normal human again. Then I take some nausea meds and a migraine medicine and hope for the best just to get a little relief from my disease, but I am still not convinced it’s even worth it.

Most of all, stress is a giant factor when it comes to me having flare-ups. So I try to avoid stress — at least enough to avoid causing my immune system to go into complete overdrive, making me so sick I am not sure I will come out of it alive. So I ask of my friends and family to not cause me more stress than is needed. And if sometimes I am just too tired to hang out or I don’t want to go out, don’t take it personally. I am just living every day trying to keep this stupid disease at bay. And do not feel sorry for me! I am a fighter, I will always be a fighter, and I will not let Crohn’s disease beat me up or keep me down.

So take this chance to read up on Crohn’s disease and understand what it actually is so that when you meet someone who has it, you can say, “Oh, I know what that is” and mean it. Not just, “Oh, my friend has that and … blah blah blah.” That is all we hear when people tell us about someone they know with Crohn’s, because they’re usually giving dietary advice. Remember: No two of us are the same, and we all have different foods we can and cannot eat.

When people have invisible autoimmune diseases, you never know what they are going through or the war their body is waging on them that day or the fight they have been in with their own body for the last week. It is an insane battle we fight!

And a big shoutout to all my fellow Crohnies! And to my amazing husband for always taking care of me and trying, even when he knows sometimes there is nothing he can do to help the pain and exhaustion except hold me. For loving me through it all, he’s the real MVP!

This essay was adapted from a Facebook post.

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