Fierce for that Kid on the Bus

I had Crohn’s disease for 45ish years before I was diagnosed. I’m pretty sure of this timeline because the first bout of unexplained abdominal pain hit when I was nine, and I literally can’t remember a time I didn’t worry about how far I was from a bathroom.

I mean, if I had a dollar for every minute I spent avoiding pooping my pants, deep-breathing my way through long car trips, getting crap from my family for going to bed early, and getting on planes anyway, I might just be rich. I think of all the friends I never told, the years of food I couldn’t eat and outings I missed – the opportunity cost of all that. Oof it’s a lot.

I bow down to my little kid, teenage, young-adult, adult, and middle-aged self who knew to look for what she needed and found a way to still have a [work] [love] [social] life. That’s a kind of grit they don’t talk much about on LinkedIn.

I was finally diagnosed at 55 after a visit to the ER and an abdominal CT for something else. After the ER doctor came in and said “Have you ever been told you have Crohn’s disease?” I came home and cried with relief. Finally, finally, an explanation for all that suffering.

Right after I stopped crying, I got mad. Like the minute after. All the doctors I saw in those 45 years?! How is it possible no one thought to look harder at my symptoms? So yes I’m grateful for my doctors, but also really really mad that I must have told at least 20 over the years about my bouts of diarrhea, fatigue, and unexplained fascia and joint pain. I have not been well-served, even by good, compassionate doctors.

And because I’m a little gender queer and very gay, I’ve always had to wonder – just wonder – if the doctors took me a little less seriously, or were more eager to chalk my symptoms up to stress. I’m not casting aspersions: I’m naming the cost of having to wonder if my identity contributed to the long delay in diagnosis.

I am willing to bet a great deal of money that being a woman has something to do with it, since basically everything that happens in our woman-bodies is under-taught, under-studied, under-treated, and under-taken-seriously.

It’s been four years since my diagnosis, and I still haven’t found a biologic that works. I’ve cycled through Humira, Stelara, Rinvoq, and Entyvio. Some have helped a little, but none has stopped the inflammation, which has settled deeply into my joints and fascia. Now “extra-intestinal manifestations” affect my quality of life as much as the active gut stuff.

So this is a story about strength, but also grief and anger.

My 12-year-old self who worried every single day about asking to leave class to use the bathroom deserves to be uplifted for everything she went through. My 21-year-old self who pooped her pants on the way to play a collegiate basketball game deserves to be honored for her extreme fortitude. That kid got on the same bus with the same people the next day for crying out loud.

So this is also grown-ass me saying girl, you deserved better. I’ll never stop
being fierce for my younger selves. Or for yours. That’s what it means to be an advocate – to claim strength, yes, but also sadness and anger. All that, for all of us.

• About The Author

Sue Phillips is on the founding team of the Workshop for Emotional and Spiritual Technology, a tech startup working to help people live more meaningful lives. After serving as a denominational executive for the Unitarian Universalist Association, Sue co-founded Sacred Design Lab, a nonprofit that interprets innovation to the religious world and ancient wisdom to the world of innovation. She was for many years a Ministry Innovation Fellow at Harvard Divinity School. Clients and partners have included Pinterest, Google, and Logitech, the Obama Foundation and the Office of the US Surgeon General.