Quite the headline, eh?
This isn't a whiney post. This is an exasperated post. But let me start this off by saying that 99% of researchers that I've worked with over the past 26 years have been complete gentlemen and ladies and the kindest, hard-working humans. These people have been my personal heroes for decades.
But that 1%..... ugh.
Dear Surgeons and other Medical Care Friends:
Please always be kind to patient advocates. We have given more and sacrificed more than any other stakeholders in the CDH world. In all rare diseases and anomalies, patient advocates toil daily.
We run the charities. We support the patient families. We educate them (so you don’t have to so much). We fund your research. We send you patients for studies. We cheer you on. We raise global awareness. We are boots on the ground every single day. Often 16 hours a day, 7 days a week.
Most of us make no money doing so. A few of us make very little money, far below the Standard of Living. So that we can give more funds to you and patient families. There’s no tenure for us. No awards. No sabbaticals. No rest. Very little recognition in the medical world and, sadly, sometimes little respect too. 😞 We are incredibly indebted to those researchers who treat us as the colleagues and team players that we are.
Most of us know all the research, stakeholders, and data as well as you. We are not novices or uninformed, and we have unique perspectives to offer. We have to work 10 times harder in research to be respected. This is life and death to us, and no one takes it more seriously than we do.
On top of all this.... we are the mothers and fathers of patients. Sometimes patients ourselves. We are fighting for our kids’ lives, while running organizations and other “real jobs”.
We don’t sit by a bedside for a shift, but every day and night. We’ve run the feeding pumps, cleaned the ventilators, put down the NG, changed the trachs, bagged, suctioned, resuscitated, and done things that parents should never have to do. Things you learned in med school, but we learned on our own children.
Some of us have lost our children and continue to fight.
Please respect who we are and what we offer. But, most importantly, please understand WHY we are here. It is professional and personal for us.
We are only here to help others, despite the pain and sacrifices most of us endure. Because we believe in hope. Because these children (and adults too) need a voice at every table. Because every congenital anomaly and disease extends far past the hospital and clinic doors.
I’ve given 26 years, my career, and my whole life to be a patient advocate, even though I lost my only child to CDH. I know many others who have given as much and more, to advocate for patients too. Yet, the majority of us cheer each other on during the hard days when doors slam in our faces and politics, egos and money matters more than patients. We soldier on.
We are strong.
We are invested.
We are brilliant.
We are an asset to you.
Let us be.
Learn more about my work and CDH International at www.CDHi.org
There's my somewhat passive / aggressive, "let's all be kind and positive" attempt to make the issue public so that it can be addressed and fixed. To make researchers aware of exactly who Patient Advocates are.
And to be honest and transparent in my journey as a Patient Advocate, so that other advocates know that they are not alone. They are seen. We are the good guys. We are valuable. We deserve respect too.
Soldier on.
