(MedEd)itorial: Living (and Breathing) with Primary Ciliary Dyskinesia — Part 2

  • /Reviewed by: Amy Rontal, MD
  • In my previous post, I shared how my pulmonologist changed my whole perspective on my condition, Primary Ciliary Dyskinesia, with a simple statement. While my PCD didn’t magically disappear, it truly felt like a moment of healing.

    I’m certain that what set the stage for that rather life-changing moment was that I had been in the care of some phenomenal physicians my entire life up until that point — physicians like my ENT, who endeared himself to me through his attentive and compassionate care from the time I was two years old through my college years.

    I mean, what compels a kid who HATES needles to voluntarily sit in an ENT’s patient chair, sweaty palms and all, staring at a wall chart depicting chronic otitis media (wondering how to even pronounce that) and trying not to flinch while her eardrums are numbed with shots that feel like bee stings so the doctor can make the necessary incisions to replace her tympanostomy tubes? A kid who truly trusts and appreciates her doctor.

    In my life as a patient, I have one cardinal rule that I live by: I try to see and interact with my doctors on as human a level as possible.

    I try to get to know more about them; to make them laugh; ask how they and their families are; make it a point to remember little things they tell me along the way so I can ask them about how it’s going the next time I see them. Most importantly, I try to show them that I firmly believe that my treatment is a two way street.

    As a patient, I’m looking to my doctors to help me fill in the blanks and guide me in making the best decisions for maintaining my health, especially when I’m facing something new. At the same time, I try to be an active and receptive participant by fully listening to and heeding their advice and guidance; to truthfully answer their questions (even if I’m scared of what it could mean), and to give them as much information as I can about how my body (and mind!) work and react to things.

    As my doctors and medical family members have told me, you know your body the best. It’s up to us as patients to share our bodily truths with our doctors, so that they can share their medical knowledge and truths with us, so that we can in turn jointly make the most well-informed decisions.

    This isn’t easy, I know. I still get uneasy when I set foot in a hospital, especially when I’m facing some new challenge or unknown issue with my lungs. Sometimes I have to focus completely on centering myself and moving past my fear so I can really take everything in when I’m with my doctors.

    Their time and expertise are precious, and to be able to have their full attention is a gift — especially now when our physicians are encouraged to crank through as many patients as quickly as possible while also facing an inordinate amount of pressure to be perfect.

    I feel deeply that the greatest gift we as patients can give our doctors is to really show up for them. To be vulnerable and real in our time with them.

    By doing so, we can in turn give our doctors permission to show up in the same way. We can take away the unspoken pressure of expected perfection and get down to living our most connected and fulfilled lives in this, our finite human existence.