The following is an excerpt from The Duchenne’s Life episode “Privacy and Duchenne” with guest Pat Furlong. To listen to the full podcast episode, please click here.
Building Medical Relationships
I think as parents we want to protect our children anyway, regardless of if there’s a diagnosis. And I think the diagnosis of Duchenne compounds that.
And because there is a great deal of medical care involved, the parents are always present, right? We sort of wrap our arms around our children and we’re in every doctor’s appointment, every school appointment. We’re just present.
And then because of that, I think parents sort of build a protective bubble around this young man – and in some cases women – with the diagnosis.
Building Medical Relationships
All human beings need to have a relationship with a physician or with another person or with themselves to do whatever they want to think, read or do. But, the more you’re involved with family at every medical visit – or even at every thought – the more difficult it is to remove them, because then it feels like a personal insult – when it is never meant to be.
It’s just a request for privacy.
I personally think that a young voice with this diagnosis – or some of the girls that have weakness by the time they’re eight or nine – it would seem to me that in that stage, we could start to give the child 10 minutes alone with the doctor.
Maybe nothing will be said, but then that time together grows that relationship and that trust, so that someday – if there is an issue – the individual with Duchenne can say, “Doctor (So and So) here’s how I’m feeling and I don’t know how to say it out loud.”
Beginning to establish a relationship with a healthcare professional, just one-on-one, is so important. And I think in all relationships, you want to establish trust because if there’s no trust then the rest doesn’t matter. So if we started with 5 minutes of private time, or 10, then maybe that length of time could grow as this person ages into adolescence.
The individual with Duchenne just wants an unbiased voice to have a conversation about a need, a wish or a thought – and for many more reasons. And I think that’s fair.