In early 2019, the New York Times published an article titled “Five Things I Wish I’d Known Before My Chronic Illness.” Like the author, I didn’t know how much my life would change after being diagnosed with Crohn’s disease. She got me thinking “If I could travel back in time, what things would I tell my past-self to help prepare for a life with Crohn’s?”

This exercise showed me how much I’ve learned and made me appreciate how far I’ve come since receiving my diagnosis.

I suspect this list will evolve as I live and learn, but knowing and believing these things would have made things a lot easier:

1. Wanting something bad enough doesn’t make it happen. You strongly want not to have Crohn’s. Don’t resist it. Accept your diagnosis and make a plan to manage it the best you can. Set measurable goals and see them through.

2. You can do everything right, but you might not get the results you want. That’s OK. You’ll get better results doing something than doing nothing. Be realistic in your expectations.

3. Find a doctor you trust and can be open with. You need to feel heard and supported. Your doctor should care about what you eat.

4. Eat healing foods. Make time for sleep. Stay hydrated. Do all of these things. They depend on one another and make a bigger difference than you think.

5. Food matters. Understanding food’s role in all of this is key, but it’s difficult. Your food reactions will be inconsistent and surprising. Sometimes a food will upset you; sometimes it won’t. Sometimes it will affect you days later; sometimes soon after eating. Finding your list of “safe” foods will take a lot of work, but it’s worth it.

6. Living with a chronic illness is lonely. You might be tempted to push people away, but don’t. Build a support system with friends, family, and dependable medical team.  

7. Being sick is stressful. You’ll want to blame other sources for your stress, like relationships or your job. People might say “well, maybe if you weren’t so stressed, you’d feel better.” Your number one source of stress might be your illness.

8. Your body is a whole system. Everything is connected. Expect your non-gut issues, like joint pains and skin issues, to improve as your gut heals.

9. Be silly and have fun. Seek out new things to do, books to read, places to go, songs to sing, etc. Some of the longest stretches of good health followed super happy, fun times. Fun is in your future, even if it doesn‘t feel like it right now.  

These are some things I wish I had known when I was first diagnosed with Crohn’s. If I had, I suspect my journey would have been easier.

What is something you wish you’d known when you got diagnosed? What is something you’d like to tell others? Share your comments below.

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