How to manage expectations as a Chronically ill patient? (and how to support them as an HCP)

On the last episode of Revolution from Your Bed, season 3: managing expectations between patients, caregivers, and the healthcare professionals treating them.

In the last episode of season 3 of the *Revolution from Your Bed* podcast, I talked about managing expectations, ours as patients, and the ones we place on the people who've dedicated their careers to helping us.

Expectations can motivate. They can also quietly wreck a relationship that's already vulnerable on both sides, especially since most clinicians are never actually trained to handle a patient's expectations of them.

Three things that would change the appointment for most patients:

Ask what the patient wants to achieve today, before starting. Patients under stress, on the clock, facing an authority gap, often forget to raise the thing they came in to raise. A thirty-second goal-setting question fixes that.

Ask how the patient feels emotionally, not just physically. Patients tend to answer a "how are you" question with a symptom description and leave out the emotional state underneath it, even when that's the actual reason they booked the visit.

Ask the patient directly what they expect from the relationship. Patients sometimes walk into a routine visit hoping to resolve something much bigger than what a short appointment can hold. Naming the mismatch up front saves both sides the disappointment later.

In other news: I was nominated for a HIMSS Changemaker in Health Award, for patient empowerment work. Genuinely exciting, not for the prestige alone, but because it means recognition is starting to reach patients doing this work from inside their own diagnosis, not just the institutions around them.

And a shorter note: I've been quiet here for a while. After a difficult stretch, I was reminded of something I already knew and still needed reminding of: it's fine not to post, not to perform constantly, even for those of us who build things for a living. Especially for those of us with an illness nobody can see. I'm back, and I'll be sharing more of the actual texture of this, not just the wins.