You Didn't Fail
When Treatments Don’t Work, The Language We Use Matters
I’m part of several online support groups for those who live with Ulcerative Colitis and liver disease and I’ve noticed this trend in the way we speak about, and relate to, different treatments when they are unsuccessful. Recently, I read the following post on one of the groups:
“I’ve failed Humira and my doctor just called to tell me I’ve failed Entyvio. My next option is Remicade. I’m sad and defeated. It seems like nothing is going to really work long term.”
I want to address the author of the post, and anyone else who’s ever felt this way after a treatment has turned out to be ineffective.
(*All names have been changed for confidentiality.)
Dear Jill,
First of all, I am so very sorry. This disease is a motherfucker. It is unfair and you don’t deserve it. Fuck Ulcerative Colitis. And I am so sorry that the treatment(s) you’ve tried, and endured, didn’t move the needle enough and now you’re back at square one with that original hope. Hope that something exists out there in the universe that will calm the storm raging inside your colon. Just so you can have a moment’s rest. So you can remember what it’s like to have a day without being tortured and strained and worried and utterly exhausted.
Jill, there was something about your post that I recognized immediately— I hear it from Ulcerative Colitis patients all the time— and it punched me in the gut. It was the phrasing.
I failed Humira. I failed Entyvio.
As if you’re not measuring up, aren’t being a team player in the pursuit to send this merciless disease into remission. If only your body had worked harder, maybe you wouldn’t have failed two biologics in a row! But that’s what you get when your body sucks, so all is fair in the end, right?
I’m not sure who is responsible for this self-punishing syntax. I assume the medical establishment is to blame for creating this common parlance which patients then adapted and began using against themselves. But I can also see how easy it would be for a patient to have constructed this sentence, making themselves the subject in front of the failed because it’s so easy to think that way, to believe we are one-hundred percent responsible for our own illness and healing, just as we are one-hundred percent responsible for passing or failing a test.
It’s hard enough going through this disease without subliminally feeling like we’re inadequate, failing the treatments, failing ourselves, failing life.
It is not true.
And I wish just making that statement was enough for us to truly know it, but our minds are complex. Language and the order in which it appears has implications. Can we agree to reverse the subject and object of the sentence? Can we take this one small step to begin reversing the subconscious messaging we’ve been violently inflicting on our psyches? Those of us who live with a chronic illness are both fiercely strong and fragile. Therefore the way that we speak, especially to ourselves, matters. A self-abasing sentence like I failed treatment x can easily turn into a self-loathing belief system which is probably the last thing we need. I tell you that from personal experience. I‘ve spent more time than I’d like to admit living in that defeated, hopeless hole in the ground. Just a few months ago in fact, unsure if I’d ever feel well again or whether my course of treatment was working, there were a few days when I woke up and thought to myself: I guess I will just lie here and be sick forever until I die. So I’m no enlightened being.
I was thinking that this is just one small way we could begin redeeming our sense of self from the disease, take a little power back, feed ourselves some love, remember that…our doctors? They work for us. The drugs? They’re on our payroll. If they don’t deliver they get laid off. So you did not fail Humira and Entyvio. They failed you, and that is deeply disappointing. Onto the next. You decide. You Jill, are running the show.
