Last week I had a virtual CF visit. During the appointment, my pulmonologist thanked me for my persistence, though he admitted it wasn’t the best word choice.

“With the heart thing. You knew something wasn’t right, and you trusted your intuition.”

He was talking about the shortness of breath that led to the heart-hole discovery. It started soon after I’d stopped taking Trikafta, so that would have been the most sensible explanation for the change. From the onset, though, something felt different. I insisted that it wasn’t the typical lung-related shortness of breath that I was well acquainted with as a CF patient.

As we investigated the cause, each test yielded same general conclusion: “You have CF; of course you’re short of breath.” Yet something in me wasn’t willing to accept it. I’d like to say it was my intuition—and that I’m a very wise creature—but my determination was also rooted in a refusal to accept this as my new normal without further explanation.

Thanks to my, ahem, persistence, we ultimately found the problem: a large hole in the heart that was allowing too much deoxygenated blood to circulate in my body. Voila?

Navigating chronic illness means being your own advocate. You have to be in tune with your body and on the lookout for changes. You have to decide when something small might actually be something big. You have to speak up for yourself time and time again.

Because of this constant need to be in Advocate Mode, it can be hard to know when to stop. At what point do you end the hunt for answers and instead accept that your health has changed? When do you let go and grieve the fact that you’ve experienced one of the many micro losses that come with chronic illness?

Mindfulness experts say that Suffering = Pain x Resistance. In other words, the more we fight against reality, the more we suffer.

But this is a delicate balance for people with chronic illness.

If I’m dealing with something treatable, I don’t want to surrender too soon. Yet there comes a point when I venture into the land of suffering—moments when the best path forward is acceptance.

I’m thankful for my doctor’s reminder that I know my body best.