"You Didn't Fail Those Medications, They Failed You."
Last updated: May 2023
I recently was giving an oral medical history to a new medical provider.
This past fall, I was diagnosed with asthma, and I had been seeing a pulmonologist to manage the condition, but it wasn't working well. So, he sent me to an asthma allergist, and while I was not thrilled to have yet another provider join my care team, and I was not excited to establish care with said specialist, I knew it was important for him to get a thorough picture of my complex medical history.
Giving him my full Crohn's medical history
As any chronic patient can empathize, it was not a short process to share everything I've dealt with medically. In fact, I think I was nearly 10 minutes in by this point when I said something along the lines of:
"After finally correctly being diagnosed with Crohn's disease, I tried and failed 6MP, Entyvio, and Humira before getting actual relief (and finding remission) with Remicade."
The doctor stopped me, and he said, "You didn't fail those medications, they failed you."
I am nearly 37 years old, and have been telling this exact same story for the last 5 years to every provider, family member, and friend I've ever spoken to about my autoimmune disease history, and nobody has ever reframed this for me.
Language is important when living with IBD
Here's the thing – language is of critical importance to me. I think carefully and painstakingly about the language I use to describe my life, the situations I've experienced, my feelings, my relationships, etc. And there's something about this re-write that really caught me off guard.
After much deliberation, I've finally put my finger on it.
As a Crohn's disease patient, there's absolutely a loss of control from the very beginning. As symptoms develop, we often lose our own bodily autonomy, from experiencing severe pain to incontinence, devastating side effects to emergency room trips, and the need for sometimes lengthy hospitalization stays – and each one of those things takes something from us.
Blaming myself for failed medications
I know in myself, there was a sense of shame that developed early on, and was continually amplified by the fact that I was misdiagnosed and incorrectly treated for so many years. I felt like I was doing something wrong. That I was asking for help that wasn't available to me.
So, each time a doctor said, "Oh, let's try this medication," I falsely held the assumption that their education and knowledge and assessment had correctly identified something that would make me feel better. And when it didn't, it meant that I had failed. I felt guilty that it didn't work. Maybe I didn't follow the dosing instructions correctly or maybe I didn't believe hard enough that the medication would be helpful for my body.
In many ways, this internal narrative continued long after I was diagnosed with Crohn's disease. So when I failed the first 3 lines of treatment, I felt like there was something wrong with me. And I also felt immediate despair. I started to believe I'd never find relief, I'd never find remission.
Finding the Crohn's medication that worked
I was lucky enough to find both about 14 months after my official diagnosis – but I know many patients are not as lucky. They don't have symptom relief, or they don't heal internally, or the medication only works for a short time, and I feel like I've heard nearly every patient use the same language as what I had been using: "I failed this medication."
But how differently would we feel about ourselves, and how much control could we take back over our bodies and our lives with IBD if we changed our language simply to state that, "This medication failed me"?
Ponder that, friends. I'd love to know what you think about it.
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