A week ago, a friend of mine told me it had happened again. She lives with an ileal pouch-anal anastomosis, a j-pouch, due to ulcerative colitis, and a functional complication with it has taken her to hospital eight times in the past year. On the ninth visit, her clinical team told her there was nothing more they could do unless she was willing to commit to a surgical option. She would just have to keep coming in whenever it got bad.
I asked her the question I already knew the answer to. Are you not ready to consider a stoma again?
She said no. She said she thinks about it a lot and wishes she were ready. Her first stoma, the temporary one made while her j-pouch was healing, was nine months of trauma she's never been able to stop carrying.
None of that is in her medical record. All her clinical team sees is a patient who continually declines a surgical option.
That gap is the whole story, and it never crosses into anything a clinician reads.
One is straightforward. People with IBD end up being seen purely as a gastrointestinal tract by their gastroenterologist. Anything outside the gut is treated as somebody else's job. When I had my first ileostomy, the stoma nurse only ever talked to me about the health of my stoma and the peristomal skin surrounding it. I had no idea she was also supposed to be available to talk to about relationships, body confidence, and even clothing, because nobody told me, and she didn't instigate those conversations.
I did not know what I did not know.
The second is more complicated, and I think it matters more. PTSD and medical trauma often don't make it into a clinical record. Sometimes patients don't mention it, potentially out of shame, but many don't mention it because they don't even know they're living with it. Nobody gave them that label.
And sometimes they do say it, but the clinician hears the words and doesn't recognise them as the driver of the decision. They don't know or understand the weight of the trauma they've just been told about.
So what gets written down is "declined a surgical option." Repeatedly. Not why.
I think about this every time I hear a pharma team talk about a trial they're struggling to recruit or retain people for. Often, the patients a trial most needs are the ones who've been through the most and have run out of available treatment options, which means they're also the ones most likely to be triggered by a process that doesn't account for the trauma they carry because of those experiences.
If nobody building that trial knows this reasoning exists, they will never design around it. And they will lose the people they can least afford to lose, at the point they can least afford to lose them.
None of this is hidden. It's shared, in detail, between people who understand each other completely, in private groups and quiet conversations like the one I had with my friend last week. It just never gets asked for by anyone holding a form.
I told her that things had changed for me, and that I hoped they would for her too. She's hopeful they will, one day.
This is one of five gaps my colleague Kevin and I have mapped in a longer paper we've written together, called Lived Experience Can't Be Prompted. If this is the territory your team works in, it's worth a look.
The white paper
Lived Experience Can’t Be Prompted
The full paper: the patient accounts in a patient expert's own words, the automate-or-never table, the references and the method.
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