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When Your Pain Gets 'Lost In Translation' Between Doctors and Nurses

The most helpful emails in health
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“My pain level is increasing steadily and is becoming concerning. I’m afraid of a local hospital visit because of my last experience, although it’s not to that point yet. It’s not every day. But when it hits, it’s horrible and affecting me quite badly. I’ve seen little improvement since increasing my infusions and my quality of life is being affected.

Any advice is greatly appreciated!”

This is how the email I sent to my gastroenterologist went, pretty much the exact wording. I sent this on a Friday afternoon not really expecting a response until Monday. Instead I got a response later that day. I’m not sure you can really call it that. It was a single sentence:

“Doctor will discuss at next clinic visit.”

My next visit is almost three weeks away!

Having a chronic condition is a balancing act, a very unbalanced one. I’m in pain, how is this OK? How can this wait three weeks? The concern over my health should be taken more seriously right, not answered with a single sentence?

My quality of life is being affected! Having Crohn’s disease has made my life unpredictable. It causes me to shy away from making plans or leaving my house at times. My life is not the only one affected — my 6-year-old son knows we can’t go to the park, because Mommy’s tummy hurts and there’s no bathroom there. Or date night with my hubby consist of me watching him eat.

I think a lot gets lost in translation in emails and texts. I love the option to email my GI… but it first goes to a nurse. We call them the gatekeepers!

They can make the difference between hearing back from your doctor quickly, or scheduling an appointment because you need to be seen sooner.

My team is good, my doctor is amazing and her nurses are the backbone of her practice. But I was disappointed with this interaction. It’s now 3 a.m… I’m awake and in pain. If I call my doctor, I’ll get an on-call resident who doesn’t know me. Who will advise me to go to the ER… because they don’t know me!

Advocating for yourself is very hard when you feel grossly out-numbered by professionals.

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Originally published: October 26, 2016
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