When Doctors Don't Believe You: One Woman's Journey From Medical Mystery to Reclaiming Her Voice
A conversation with Deborah Weed, founder of the Self Worth Initiative and creator of Paisley the Musical
Have you ever left a doctor's appointment feeling more invisible than when you walked in? Has someone you love -- or a medical professional -- ever suggested that what you were experiencing "might be in your head"?
If so, you are not alone. And this episode of the Medical Trauma Support Podcast is for you.
When I sat down with Deborah Weed, author, artist, and founder of the Self Worth Initiative, I had a feeling this conversation was going to be impactful. I was right. Deborah's story is one of the most powerful I have shared on this podcast, and the response from our listeners has reflected that.
So let's dive in.
From Corporate Powerhouse to Three Years in Bed
Before her illness, Deborah Weed was a force. She served as Director of Development for Citibank across 19 branches and consulted with Universal and Disney on a $26 million pavilion for Kia Motors in South Korea. She had built the career, the identity, the life.
Then everything stopped.
Deborah spent three excruciating years mostly bedridden, experiencing pain she described as feeling like giving birth every single day. And what made it even harder wasn't just the physical suffering, it was the cascade of confusing, contradictory, and dismissive responses she received when she sought help.
The first doctor suggested she might have MS located too high in her brain stem to be detected until after death. The second suspected Lou Gehrig's disease, with no timeline for answers. The third told her it was all in her head.
When no two doctors agreed, even the people closest to her, including her husband, began to question whether she was really experiencing what she said she was experiencing.
The Most Painful Part of Medical Trauma: Not Being Believed
Deborah named something in this conversation that I hear again and again from people in our community, and I want to make sure it doesn't get glossed over.
She said: "It's one thing to have unbelievable pain, but to have one's integrity questioned when I pride myself on being a truth teller -- that hurts."
She began to shrink. A woman with a powerful voice, a woman who had moved through the world with confidence, began to wonder if everyone else was right and she was wrong. She lost her footing. She didn't want to go on.
This is what happens when people with mysterious symptoms, rare diseases, chronic illness, or any condition that doesn't show up neatly on a test are dismissed instead of believed. The medical experience itself becomes traumatic, not just because of the physical suffering, but because of the rupture to trust, identity, and self-worth.
For family members, caregivers, and clinicians who might be reading this: Deborah's story is a reminder of what it costs when we don't believe people about their own experiences in their bodies. The absence of a clear diagnosis is not evidence that someone isn't suffering.
The Hidden Diagnosis That Nearly Cost Her Life
After years of searching, a doctor finally found the answer. Deborah's iron levels were at a 3. Normal is 15. She was, quite literally, close to dying.
A grapefruit-sized tumor had been growing behind her uterus, hidden from the ultrasound technology being used at the time. She had been hemorrhaging, dismissed as heavy menstruation, for years.
The diagnosis didn't bring the validation she hoped for. Some people in her life couldn't bring themselves to acknowledge how wrong they had been. Others simply moved on.
But Deborah moved somewhere different. She moved toward creativity.
How Creativity Became Her Path Through Medical Trauma
Deborah describes creativity as something that downloads through you from a place beyond yourself. She doesn't position it as a hobby or a distraction. She describes it as the thing that, again and again, through three separate life-threatening medical situations helped clean the trauma from her system.
From a nervous system perspective, this makes complete sense. When we are consumed by our pain, we are often focused on the problem, running the story over and over, staying locked in a state of activation or shutdown. But when we access something that brings genuine joy, something that flows through our gifts, we begin to move back into what polyvagal theory calls the ventral vagal state: the place where we feel safe, connected, and where deep healing actually becomes possible.
Deborah didn't just use creativity to cope. She used it to build something meaningful. That instinct, the decision she made from her sickbed that if she survived, she would spend her life helping others reclaim their voice, led to the founding of the Self Worth Initiative.
Self-Esteem vs. Self-Worth: A Important Distinction
Deborah shared something she had to discover the hard way and that was that self-esteem and self-worth feel very different to her.
Self-esteem, she explained, is built on what you do. Your title. Your achievements. Your output. When you can't do anything because you're bedridden, your self-esteem evaporates.
Self-worth is different. It's rooted in what you believe about yourself. It isn't contingent on productivity or performance. It is yours even when everything else is stripped away.
This distinction matters enormously for anyone healing from medical trauma, a population that so often feels defined by what their body can no longer do, by the appointments and the procedures and the limitations. Self-worth is what remains when the illness has taken everything else.
"Quills Up, Power On": The Musical Born From Loss
Deborah is now channeling all of it, the pain, the disbelief, the recovery, the hard-won wisdom, into a full-scale musical called Paisley the Musical.
The protagonist is a porcupine named Paisley who lives in a glamorous animal fashion world. Paisley is slowly required to give away her quills, the very things that protect her, to serve a powerful designer named Zavonna. She gives pieces of herself away, one by one, until almost nothing remains.
It's a story about losing your voice and reclaiming your power. It's a story about what happens underneath the surface for those who look like they have it all. It's a story Deborah says is aimed at the multi-generational conversation happening between women and girls, those who have already lost their power and those who are just beginning to wonder if they can hold onto theirs.
The movement woven into the musical is called Quills Up, Power On.
And in a moment at the end of our conversation Deborah said something that I think is worth thinking about: "Porcupines' quills grow back. So does our power."
Shared Decision-Making: Finding Your Voice in Medical Settings
One of the things we talked about in this episode is the challenge of advocating for yourself in medical settings when you've gone there to be saved. How do you use your voice when you're terrified? How do you question a doctor when you're relying on them for your life?
This is why shared decision-making matters so much. You have a body. You have a life. You get to be part of the team that decides what happens to it. That means having a real conversation about risks and benefits, having your history heard, and knowing that informed consent is more than a signature, it's an ongoing dialogue.
For anyone preparing for upcoming medical appointments and wanting to feel more grounded and less anxious walking in, my digital guide Navigating Medical Appointments with Your Nervous System was created exactly for this. You can find it in the shop on my website.
If You're Somewhere in Deborah's Story Right Now
Maybe you are still looking for answers. Maybe you've been told it's in your head. Maybe you received a diagnosis but the people around you didn't respond the way you needed them to. Maybe you are on the other side of something frightening and you're trying to figure out who you are now.
The Medical Trauma Support Circle is a warm, trauma-informed community built for exactly these moments, for the times when you need to know you are not alone and that someone understands. I would love to have you there.
And if this episode resonated with you, please share it with someone who needs to hear that their experience deserves recognition.
Connect With Deborah
You can learn more about Paisley the Musical and the Self Worth Initiative at paisleysfashionforest.com. Deborah is also actively looking for singers, dancers, producers, and investors as she moves this movement forward. If that's you -- or someone you know -- reach out to her directly.
Listen to the full podcast episode.
Because your experience deserves recognition.
For personal use only. No part of this document may be reproduced, distributed, resold, or shared without written permission from the author. © 2026 Sarah Stasica / Medical Trauma Support. All rights reserved.