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When Helping Others Accept My Illness Is Harder Than Accepting It Myself

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Accepting my illness has been a long and winding road full of denial and super-powered laxatives.

But finally, over six years after my initial diagnosis and about a decade after I began suffering from symptoms, I feel like I’ve accepted it. Crohn’s disease doesn’t define me, but I’ve made space for it in my life. It’s a part of me, for better or for worse, like an extended family member you don’t particularly like but deal with because you have to.

I was diagnosed right after my 18th birthday — arguably not the most responsible time in someone’s life. I was always a smart kid with a good head on her shoulders, but I was nowhere near ready to deal with the implications of a chronic illness that wasn’t going away. No one prepares you for being told “You’re sick now! Forever!” when you’re looking out on the rest of your life from high school.

Years of doing the bare minimum has put me in a bad health state since about a year ago, and now I am amidst a months-long flare. It’s awful, but as an optimist, I’ve chosen to look at what the experience has taught me. It’s taught me to cook, and to take care of myself, and to prioritize my health. It’s taught me that I need sleep, and that follow-up doctor appointments are more than just mere suggestions. If anything, taking my health away in such a dramatic fashion has made me fight for it that much harder, which is something I won’t soon forget, even after this flare ends.

So I’ve (pretty much) accepted my illness at this point. I still have days where I cry, or complain-athon to my sister about how unfair it all is, or when I get a medical bill that makes me worry for my financial future. But for the most part, I’ve carved out some space in my life for my Crohn’s, where I can do my best to manage it hands on. I stay in when I need to, even if that’s almost every night. I buy a lot of Icy Hots. I don’t eat all the delicious fried foods I used to inhale on a daily basis.

Oddly enough, the hardest part wasn’t my acceptance of my situation — it’s everyone else’s. I spend too much time worrying about how others will react to my symptoms. I worry talking about it will make them uncomfortable. I feel a pang of guilt every time I cancel a plan. I vacillate between wishing people understood better to knowing I need to cut them all some slack. This isn’t an easy thing to understand.

But sometimes, helping others accept the truth of my situation can get a bit exhausting. Explaining that yoga won’t cure me, and neither will a juice cleanse. Explaining that I can feel terrible one day and OK the next, in a seemingly random yet endless cycle, and that seeing me out doing something does not mean I am suddenly healthy. Explaining that asking me if I’m “better yet” or “still sick” just makes it harder for me to accept that no, I’m not, and yes, I am, and will be for the rest of my life, unless someone finds a cure. I know people ask because they think they’re being optimistic or helpful, and that it’s hard for healthy people to swallow the fact that a 24-year-old girl is sick all the time. But if I can accept it, and the tens of thousands of other chronically ill young people out there can accept it, so can you.

So what can you do? You can understand that this is for life, but that I’m learning to deal with that. You can offer a listening ear when I need to be angry or cry. You can indulge me when I want to grab lunch instead of bar-hopping. You can choose not to give up on me, even after I’ve had to turn down plans for the eight millionth time.

Here are just a few of the most thoughtful and helpful things my friends and family have done for me this year that show me they care and, even if they might not know what it’s like to be chronically ill, they’re trying to understand: mailing me toilet paper with Donald Trump’s face on it, because laughter is the second best medicine (morphine is the first). Texting me at 3 a.m. while out at a bar because my insomnia was in full effect and I wanted to live vicariously through someone else. Sending me a cookbook of recipes I can eat. Surprising me with little gifts to put a smile on my face. Driving over an hour each way to my apartment to eat lunch with me because you knew I was feeling isolated. Giving up a fun Saturday night out to sit on the couch and watch a bad movie with me. Asking me, in a genuine way, how I am feeling on any given day. Making me feel like less of a burden.

Clearly, I have some amazing people in my life. My goal now is to make everyone as understanding about chronic illness as the people I’m talking about in that last paragraph. It would make the world a much nicer place, don’t you think?

Follow this journey on Sicker Than Your Average.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 16, 2016
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