medical doctor holding patient's hands and comforting her

To the Nurse Who Said the Most Perfect Words About My Rare Disease

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To the Nurse Who Said the Most Perfect Words About My Rare Disease

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Dear Nurse,

I’m sure for you it was just an ordinary day. It is just what you do. You are so filled with compassion that it just comes out of you naturally.

But you made a world of difference to me, far more than you will ever know.

As I sat in the waiting room all dressed in the appropriate patient attire — gown, housecoat, hospital slippers I once again ran through in my head what I would need to tell you. That I had a very rare medical condition that makes doing this medical procedure much more complicated. That this procedure had a high likelihood of triggering an attack that could be life-threatening in a very short amount of time, requiring very specialized medical treatment. That this disease, and treatment, is so poorly understood in the medical community that there could be a high chance that my life would be at risk simply because of all the unknowns related to this disease. That I’ve had too many times in the past where the medical team thought they knew better and did not listen, placing me in much medical distress.

Before I could fully finish rehearsing in my head what I needed to say, you called me from the waiting room. As you greeted me and ensured you took the time to ask the proper pronunciation of my name. Then you assisted in getting me settled in the procedure room taking the time to clarify several important points: your name, your role, and a good overview of what was to happen over the next few hours.

Then, as expected, you began taking my medical history. As it came time to discuss my very rare medical condition, I began to speak quickly and was prepared to hand you the stack of medical journals and letters from my speciality clinic. It was my attempt to dump as much medical knowledge about this disease to you in what short time I knew was allotted to take my medical history.

But then you said the perfect words that I needed to hear: “I never heard of that condition before. My years of experience as a nurse has taught me those living with rare conditions know their bodies, and their disease, better than anyone. Can you please tell me all that you think is important for me to know before we start this procedure? You can take as long as you need to explain it.”

With each one of her words I could take deeper and deeper breaths, relaxing as I explained how this disease would impact this medical procedure. You listened intently, only interrupting to ask additional questions to help best understand.

Once I felt that you had a good understanding of how this disease affected my medical procedure, you very gently collected the rest of the medical team in the procedure room and brought them to silence around me. You shared with them that I had a rare disease and allowed me the opportunity to tell the entire team what I had just shared with
you.

When all the questions from the team had ended you allowed me a few moments of quiet. You then then asked me if there was anything further that I felt needed to be shared with the team; both about my medical history and about me as a person.

I could easily respond with, “No, you have provided me an opportunity to share all that I need to.”

You have no idea the gift that was. The opportunity to ensure all in the room knew how to prevent me from entering a life-threatening situation.

As the procedure began, I couldn’t see what was happening so you explained each step to me right before the doctor did it.

During the first big pinch of pain you asked me how I was feeling.

I felt comfortable sharing the true feeling in that moment. “Anxious.”

It was then that you pulled up a chair beside me and took my hand. You looked me in the eyes and told me I could squeeze your hand as hard as I needed to. Then you continued to explain what was happening, allowing equal time for explanation and quiet.

And then it was all over. I made it through. And it all went OK. There are only two words I have left to share with you: thank you!

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Thinkstock photo by michaeljung


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