Article: When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat — NeurologistMom’s Substack

[Chandelier]

When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat

How parents of medically fragile children learn to stay silent, “cooperative,” and afraid while trying to protect their child from a healthcare system that increasingly sees them as the problem instead of the disease.

neurologistmom.substack.com

When Doctors Suspect the Parent Instead of the Disease: Parents Silenced Under Threat​

600-word article from a neurologist and carer of a daughter with ME/CFS.

When I received a call the day after my daughter’s healthcare provider saw her online for her debilitating trigeminal neuralgia pain, I was driving home from the pharmacy.
I thought they were finally going to refer her to a specialist.
Instead, I was told to pull over my car and stay calm while they explained that they were planning to send an ambulance to take my daughter to a rehabilitation facility “to get the care she needed.”

There are far too many stories online of children leaving those “rehabilitation” facilities permanently harmed.
Some families even lost their children entirely, as in the case of Maeve Boothby O’Neill in the UK.
We could have easily become one of those families ourselves.
In fact, I believe there are many similar cases happening quietly every day that the public never hears about.

From the end:

Today, my daughter turned 18.
For the first time in years, I realized no HCP can hold the threat of intervention over our heads anymore while we are trying to navigate the complexity of her illness and make impossible decisions for a medically fragile child.

The fear is finally gone. The trauma is not.

And I still wonder how many parents are sitting through similar appointments right now, forcing themselves to stay quiet and “cooperative” while desperately trying to keep their child safe.

About the author:

As a neurologist, M.D., dementia specialist I've devoted my entire life and career to advocating for Alzheimer's patients, their families, and caregivers.
Managing treatment plans for thousands and spearheading numerous social initiatives has been my passion and commitment.
Now, as the mother of a 15-year-old grappling with Long COVID and ME/CFS, I find myself facing a new challenge. Despite my expertise, navigating my daughter's treatment journey has left me feeling isolated and disheartened.
This personal struggle has underscored the urgent need for more research, advocacy, and professional support in this often-overlooked field.
Feeling profoundly alone in managing my daughter's treatment, I can't help but wonder about the struggles of other patients and their families in reaching out to healthcare professionals.
It's clear that we need to unite and fight for our rights on this incredibly painful journey. Driven by a desire to raise awareness and provide accurate information, I've decided to create an account on Substack.
My plan is to start with interviews from a neurologist’s perspective with scientists and physicians working in this field.
Thank you for visiting my account.

 

[Sly Saint]

sadly there are a lot of these cases. Jane Colby at Tymes trust spent a lot of her time on this. see tag 'fii'