Posted by Natalie Beck on February 25, 2020
I’ve been watching a show called New Amsterdam. As a person who lives with Crohn's disease, I really appreciate the way the writers try to incorporate healthcare in such a patient-focused way. There’s a quote I really like from the show about importance of patients being the experts:
“...Leave the quantifiable behind and rely instead on experience.”
Chronic illness exists in a field of numbers. We track data, analyze statistics and quantify outcomes - and yet it still feels unpredictable, unknowable, impossible to solve. All the numbers may indicate that a flare will come, or a treatment will fail, or a hospitalization will occur, or that a surgery looms in the future. But when? Why? How? There's no rhyme or reason for cause or cure, flares or remission. This uncertainty is on our shoulders day in and day out.
The way an illness manifests itself varies greatly from person to person. No two people have the exact same set of life experiences. So while we're using what's known to try to understand as much as we can about IBD - symptoms, treatments, nourishment, mental health, comorbidities, etc - let's not forget about the importance of patient experience.
There’s a lot that I know just through my own experiences, like:
💙 I've experienced life with Crohn’s for eight years now and I’ve been through a lot of ups and downs
💚 I've grieved the loss of my health, and adjusted to a "new normal," only to have that change all over again
💙 I've experienced finding a treatment that works for me, and I've also experienced the failure of treatments
💚 I've lived with a nagging anxiety hanging over me, that someday I will get really sick again
💙 And, through all this, I have shared my experiences and made connections with other patients over the uncertainty of IBD, and it's helped me feel like I can get through it
I am aware that this balance of life and Crohn’s, of known and unknown, will challenge me physically and mentally forever. But experience tells me that I can cope with that awareness.
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