Chronic, incurable, autoimmune disease—it’s hard to imagine a more abrupt change to drop into someone’s life (except for perhaps cancer, but let’s let the cancer people have their own support websites).
What if diagnosis was more like a game show? “Congratulations,” your doctor might say, “The results are in, and you have won the grand prize for life—CROHN’S DISEASE!!”
Confetti and balloons rain down from the ceiling, while you cover your mouth in an attempt to hide the shock. Your friends and family cry happily in the front row as an overly-attractive nurse leads you to your prize: a lifetime of pain, suffering, and prescribed medication.
Whomp, whomp.
Then reality hits, you have to pay taxes on your million-dollar prize money, and you leave the doctors office and go home—to your new life with Crohn’s Disease.
How do you live it? What comes next? Where do you even start?
If you’re lucky, you’re friends with another grand prize winner. You call them up and say, “Hey friend, I just got diagnosed with Crohn’s Disease. What do I do? Is my life over?”
Your friend helpfully says, “Why no, of course not! It’s entirely possible to live a fulfilling life with Crohn’s Disease. Here’s how I did it….” And then you spend the next twenty years on the phone, learning and discussing.
If you’re not lucky, you turn to the next-best thing to a friend: the Googles.
Maybe that’s what led you here.
My friend, you are in the right place. I want to be that friend for you.
I’m designing this site to become Crohn’s Disease 101: Everything You Wanted to Know About Living with Crohn’s Disease but were Afraid to Ask.
Every resource that I’ve emailed to a friend? Right here.
Every nosy question that I’ve asked? Yup.
Every piece of advice that I gained since my diagnosis at age 6? You bet.
If you’re still reading, consider yourself an early adopter. I’m still building out this section of the site, so you’ll get to watch it grow to include modules on
- The basics—anatomy, the pathology of Crohn’s, nutrition, etc.
- Your options—the healthcare system and alternative treatments
- How to apply all of these things to yourself—not me, or some mythical idealized patient, but you
There will be plenty of links to resources to all the folks who have helped me on my healing journey, questions to test your understanding, points for reflection, and other good elements of a quality curriculum.
I want this course to be like a PhD in having Crohn’s Disease.
Interested? Start here.