Sometimes, Rescheduling is More than Just Frustrating

We did it! Soraya had her metabolic cart test today (rescheduled from Friday) and she made it look effortless.

This was a big relief as we left our first try at the test feeling really defeated, and I couldn’t quite put my finger on why. I knew it wasn’t that the equipment had malfunctioned – after a decade of appointments, we both realize things sometimes don’t work out. Then it dawned on me...it was from how the situation was handled.

Soraya sobbed when the tech told us we’d need to reschedule. She said this test may help her understand why she gets dizzy and feels weak, and that she is dying and this may help give more information.

Yes, it’s a heavy sentiment to hear AND it’s true AND Soraya was visibly upset, which then made me visibly upset. And yet the tech just stared blankly at us and repeated “It’s ok. You can reschedule.”

I don’t think I could articulate how I felt in the moment, but with time I realized this unfortunate and familiar feeling of not feeling seen and heard. It’s so tough to expect compassion all the time from every healthcare worker you meet – and at the same time, shouldn’t that be expected? This encounter ultimately did not impact or change our outcome. We had a great experience today...however, it is a reminder to advocate when needed.

It’s ok to speak up (and yes I did) to share experiences that could have gone better. If there are times when you don’t feel seen or heard, it’s ok to find a provider that can have compassion. We have been SO BLESSED with our care team at our hospital, but that doesn’t mean every interaction is as I hope for.

Tomorrow we head to Columbus to meet with our neuromuscular physician. She is one provider we travel outside the city once a year to see. We had an encounter at our home institution that made us feel unseen, invalidated, and there was no compassion, so we looked elsewhere. Luckily we found a wonderful physician in Columbus – she is actually now retired from clinical practice yet is committed to seeing Soraya for as long as she’s able. 

We are grateful for those who invest in Soraya and care to help...even if they don’t have all the answers 🙏🏾