Open Letter To Doctors by Guest Writer, Carolanne

Hello All:

Today’s blog has been written by one of our members, a mother, who is trying to get a diagnosis and proper treatment for her daughter who is suffering greatly with symptoms much like Periodic Paralysis. Her frustration is evident in this open letter to the doctors she will see in the future.

Many of us with PP have dealt with and are dealing with this frustration.

Thank you Carolanne for sharing with us.


Dear Unknown Doctor:

My daughter has been sick. We know she has been sick and we don't know what it is. This is what we want from you:

(1) Don't do what the other doctors have done. Don't look at their notes. If we agreed with what they said, we wouldn't be seeing you. Look at past lab results, but don't look at the opinions of others. We need someone who will take a fresh look at what is going on, and be confident enough to make their own decisions.

(2) You must care. Please don't tell us that you don't know and then discharge us from your care. Say instead, "I have no idea what this is, but I'll do some research." or even, "I have a colleague, Dr. B., he may know. I'm going to set you up with him/her."

(3) Respect us. We have been living with this a long time. We see things that you won't see in a 30-minute appointment. Look at the data we bring in. Don't brush it off. We are not stupid we brought it as proof of what is going on. Don't "not look at it" and then have the gall to say "it's psychological". We are concerned and we spend our days trying to find out what is going on with someone we love very much.

(4) Please think outside of the box. There are so many rare diseases, mitochondrial reactions, genetic mutations, and people. Yes, people. We are all different. Please be open to the fact that our symptoms may be slightly different as well. We all don't fit into a box, but we all need your knowledge and expertise. Some of us will need your detective skills, and others may need those skills you need when you are putting together a 5,000 piece puzzle.

 
(5) Most importantly, LISTEN. We are spending thousands upon thousands of dollars to help our loved one. This sickness/illness/disease/condition has taken over our life. Listen to what we are saying and if you cannot empathize, please sympathize.

Until later…