The Day I Learned to Hate Art

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I love art. It has a place in schools, museums, theater, and in other ways that enrich our lives. But I don’t want it to dictate the medicine my daughter takes.

Fifth grade was pretty good for Rachel as far as IBD goes – certainly better than the end of third grade when she was diagnosed and fourth grade when she was still on a bit of a rollercoaster and her doctor was working to find the right medicine to keep her stable. Rachel had a nice stretch of feeling pretty good. Getting through school. Playing soccer. Until it was over. A recent colonoscopy revealed that even though she has been feeling pretty good, the medicine she is currently on isn’t working and there are clear signs of active disease.

For most of fifth grade, she was able to wake up in the morning, take her pills, have breakfast, pack up her homework and books and carry her lunchbox and backpack down to the bus stop. She looked like the rest of the kids in the neighborhood. Except that her backpack was always a bit heavier. Because she was always carrying around her IBD. She may not have thought about it each day on the walk to the bus, but her disease always hopped right into her stuff and she dragged it around each and every day. Her biggest challenge was fighting through the anemia and lack of stamina that her doctor still hasn’t been able to fix. The treatment plan is “try this and if that doesn’t work we will try something else.” It has been constant fiddling with dosages of different medications, checking blood work, fiddling again, and so on. Trial and error.

Anyone who has an infection gets an antibiotic. Anyone who breaks a bone gets a cast. Anyone who has a cavity gets a filling. The science is conclusive and the doctors know what to do to fix it.

When I reached out to a leading clinician in the field for some guidance and advice – which he provided – he put it diplomatically, “treating IBD is as much about art as it is about science.” I knew this already, but it didn’t make it any easier to hear it from a leading expert. I learned early after her diagnosis that there was no handbook. There was no ‘patient like Rachel’ that could inform with confidence her treatment pathway or how to weigh the benefits and risks of every decision. This disease is so personalized, yet the information and science available to her doctor is not.

IBD isn’t the only disease that isn’t yet fully understood. But it’s the one my daughter has. And I want better for her than being a guinea pig.

I am glad we have options. I am grateful that we have access to doctors who have the knowledge they do. But I look forward to the day when science drives care and management. Not art.

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