Pain, persistence and the power of self-Advocacy
WHEN THE SYSTEM FAILS, YOU MUST BECOME YOUR OWN ADVOCATE
I never thought I would be the person questioning doctors. I grew up believing that the medical system had the answers—that if something was wrong, I just needed to find the right specialist, take the right test, or get the right prescription. But after years of searching, suffering, and being dismissed by both Western and holistic medicine, I realized something profound: the system is deeply flawed.
Doctors are trained in a model of specialization. They often see patients as a collection of symptoms rather than as whole, interconnected beings. They prescribe medications without investigating root causes. And worst of all, if your condition doesn’t fit neatly into their diagnostic criteria, they might dismiss you entirely.
This is my story—a journey of pain, frustration, and ultimately, discovery. It’s not just about my struggle with Ehlers-Danlos Syndrome (EDS) or the years of being misdiagnosed. It’s about the broken medical system that fails so many of us and the power of taking control of our own health.
I am not a doctor, but I know when I’m losing my patients.
For decades, I’ve studied human anatomy and physiology as a licensed massage therapist and educator. I’ve helped people heal from chronic pain, stress, and trauma. I’ve spent years researching modern nutraceuticals, understanding the biochemical connections between the body, mind, and environment. And through my own experience navigating the medical maze, I have developed something many doctors lack—an ability to think critically, holistically, and with empathy.
This story is for anyone who has ever been told "everything looks normal" when they feel anything but. It’s for those who are still searching for answers, for those who feel dismissed, and for those who are tired of being told their symptoms are "all in their head."
This is not just my story. It’s a call to action for every person struggling in a system that wasn’t designed to truly heal.
Because if you seek real answers, sometimes you have to find them yourself.
Part 1: The Morning Everything Changed
JUNE 6, 2021: THE DAY MY LIFE SHIFTED
I woke up on June 6, 2021, with a deep, aching pain in my hip and groin—the kind that didn’t feel like normal soreness. The day before had been my daughter’s fifth birthday party, and we had been running around, playing games, even doing a sack race. I assumed it was a muscle strain or maybe a bad sleeping position.
But as the hours passed, the pain didn’t fade—it settled deeper.
Something felt wrong.
I expected it to loosen up and resolve itself like any other soreness, but instead, it lingered. Days passed, and it only got worse.
The First Doctor’s Visit & Antibiotics
By June 15, 2021, I decided to start ruling things out.
What if it was an infection? I had no obvious reason to think that, but I went ahead and got a full STD panel just to be sure.
The results came back negative.
By June 19, 2021, I had my first doctor’s appointment in adulthood—a telemedicine visit with Dr. Mark Allen, a Harvard-trained physician.
He listened to my symptoms and suggested doxycycline.
But I had already been doing my own research, and I requested azithromycin in addition—a broader-spectrum antibiotic—hoping that if there was any underlying infection, this combination would wipe it out completely.
I followed the prescription exactly as instructed, hoping for improvement.
Instead, everything got worse.
The pain intensified, and fatigue crept in—not the usual kind of tiredness, but a deep exhaustion that I couldn’t shake.
It was becoming harder to do normal tasks, to move, to keep up with my daily life.
And then, I started noticing something alarming—blood in my stool.
The ER Visit: A Dismissive Experience
By early July 2021, the bleeding hadn’t stopped—it had been going on for more than two weeks.
The pain was still there, but now, the bleeding concerned me even more.
I went to the emergency room, expecting a real evaluation—tests, imaging, something.
Instead, the experience felt rushed and dismissive.
They didn’t seem particularly concerned about the symptoms I was describing. I was hoping they would try to find the source of the bleeding, but instead, they sent me home with no answers and no sense of urgency about what was happening in my body.
It was the first of many moments where I felt like the medical system wasn’t listening to me.
The Holistic Doctor Who Didn’t Hear Me
After the ER failed me, I decided to try a different route.
Western medicine wasn’t giving me any real answers, so I looked for a holistic doctor—someone who might take a more thorough, whole-body approach.
That’s when I found Nancy Wiggins, a holistic practitioner in Anchorage.
By the time I walked into her office in November 2021, I was desperate for someone to take me seriously.
I explained everything—the hip and groin pain, the fatigue, the bleeding, and most importantly, that I had Ehlers-Danlos Syndrome (EDS).
I was hoping she would understand the complexity of EDS and that she would connect the pieces in a way that traditional doctors hadn’t.
Instead, she did a manual examination, made some notes, and told me we could do more testing.
But I didn’t feel heard.
I didn’t feel like she was acknowledging what I was telling her.
At the end of the appointment, I walked away without any sense of direction, without any actionable next steps, and worst of all, without feeling like anyone was truly investigating what was happening to me.
The Isolation of Not Being Believed
By the end of 2021, I had been through Western medicine and holistic medicine, and neither one had given me the answers I needed.
No one had put the pieces together.
No one had seen the big picture.
And worst of all, I had started to realize something that I had never thought I’d experience:
What it feels like to be medically dismissed.
I wasn’t making this up.
I wasn’t overreacting.
I wasn’t imagining my pain, my fatigue, or my body’s signals that something was deeply wrong.
But because I looked young and healthy, because I didn’t fit into their predefined medical checklists, I was being ignored.
A Life-Altering Realization
By the end of 2021, I had no diagnosis.
No one had connected the dots.
And worst of all, I had lost faith in the medical system.
But what I did have was a growing realization—
If I wanted answers, I was going to have to find them myself.
And that realization would change the course of my health forever.
Looking Back: What They All Missed
Now, with the full picture in hand, I can see so clearly what was happening.
The hip and groin pain? Likely an early symptom of Ehlers-Danlos Syndrome (EDS) affecting my connective tissue.
The fatigue? A sign of nutritional deficiencies and dysautonomia, both of which are common in EDS patients.
The bleeding in my stool? Connective tissue fragility and vascular issues, which are often linked to EDS and could have been a major warning sign of something deeper.
Had one doctor taken the time to think holistically, they could have put the pieces together.
But that didn’t happen.
Instead, I was left in pain, exhausted, and without direction.
This was just the beginning of my fight for answers.
But at this moment—back in 2021—I didn’t know that yet.
All I knew was that I was sick, exhausted, and completely on my own.
Part 2: EDS Diagnosis and Insights
By late 2023, after over two years of unexplained symptoms, worsening fatigue, and a frustrating cycle of medical dead ends, I was desperate for answers. My pain, digestive issues, and skyrocketing blood pressure weren’t improving. And no one seemed to be able to connect the dots—until I met Dr. Rosales, a cardiologist.
The Cardiologist Who Finally Connected the Dots
On December 15, 2023, I had my first appointment with Dr. Rosales, a cardiologist. This was after my first-ever ambulance ride on October 4, 2023, when I thought I was having a heart attack. My blood pressure had spiked to 187/110, and while my troponin levels were normal (indicating no heart attack), it was clear that something was deeply wrong.
Dr. Rosales ordered a heart monitor test, a stress test, and an echocardiogram.
• The heart monitor revealed nothing unusual.
• The stress test showed I was in great shape for my age and condition.
• The echocardiogram revealed an enlarged aorta, which can be a serious issue for someone with a connective tissue disorder like EDS.
For the first time, a doctor saw the full picture.
Dr. Rosales told me something no one else had put together—that my long-standing hip and groin pain, digestive issues, and cardiovascular symptoms were all likely related to Ehlers-Danlos Syndrome (EDS).
This was huge. For two years, I had been seeing specialist after specialist, and none of them had acknowledged that all my symptoms were likely connected to a single condition. Dr. Rosales was the first to say:
“All of this probably stems from your EDS.”
The Frustrating Trial and Error of Medications
While I appreciated that Dr. Rosales recognized the EDS connection, his approach to treatment was pure pharmacology. He prescribed multiple medications—one after another—none of which truly helped.
Here’s what I was put on over time:
Metoprolol
Amlodipine
Carvedilol
Eplerenone
Losartan
Lisinopril
Triamterene Hydrochlorothiazide
Each time one didn’t work, he would switch me to another. Some of them had awful side effects—like Triamterene Hydrochlorothiazide, which gave me severe muscle cramping. And despite all these medications, my blood pressure wasn’t improving.
The Moment I Lost Faith in My Doctor
After exhausting every pharmaceutical option, Dr. Rosales circled back to two recommendations—aged garlic and Ginkgo Biloba.
The problem?
These were the exact two supplements I had suggested at our very first appointment.
I had spent months taking unnecessary medications, suffering from side effects, only to be told to try what I had already researched myself.
At that moment, I lost all faith in him. It became painfully clear that he had given up on me. He had nothing left to offer—no real solutions, no deeper investigation, and worst of all, no memory of the fact that I had already told him about these supplements months ago.
I walked out of that final appointment knowing I would not be coming back. But I will always give him credit for one thing:
He was the only doctor who connected my cardiovascular issues, my pain, and my digestive problems to EDS.
Getting My Official EDS Diagnosis at Alpenglow
With this knowledge in hand, I pursued an official diagnosis for EDS.
On November 29, 2023, I had my first appointment at Alpenglow with Jennifer Davis, one of the few EDS specialists in Alaska.
She confirmed my Ehlers-Danlos Syndrome diagnosis, scoring me 7 out of 9 on the Beighton Scale—the criteria used to assess hypermobility and connective tissue disorders.
Davis did not attempt to connect my symptoms to nutritional deficiencies or discuss treatment options in-depth. Instead, she suggested I take a perscription, a medication for pain relief, even though I wasn’t experiencing significant pain at that time.
By then, my pain had dramatically improved—not because of pharmaceuticals, but because of lifestyle changes I had made myself.
At this point, I wasn’t looking for pain management—I was looking for answers.
Why Aren’t Doctors Asking the Right Questions?
By the end of 2023, I had seen some of the best doctors in their fields:
• A cardiologist who could diagnose my heart condition but relied solely on pharmaceuticals.
• An EDS specialist who could confirm my diagnosis but did not offer meaningful treatment options.
Not a single one of them had ever tested me for nutritional deficiencies.
It was only through my own research that I began to understand the critical role of nutrient deficiencies in EDS.
This led me to a shocking realization:
How many other people are out there suffering, not getting results, because their doctors refuse to look at nutritional deficiencies and genetic mutations?
The System is Failing Patients Like Me
Doctors are supposed to be the best at what they do. But because they were so specialized, none of them were able to see the whole picture.
• The cardiologist was focused on my heart but ignored the underlying cause.
• The EDS specialist confirmed my diagnosis but offered no meaningful treatment.
• None of them considered nutrition or genetics as a factor.
Ø And this makes me wonder:
How many people are still suffering because the medical system refuses to ask the right questions?
For two years, I was shuffled between doctors who only treated isolated symptoms. If I had followed their guidance blindly, I would still be on ineffective medications, my hair would still be falling out, and I would still be suffering.
Instead, I took control of my own health.
And as I would soon discover, the answers I had been searching for were in nutritional science and genetic research—something the medical system had completely ignored.
Next Step: Uncovering the Role of Nutrition and Genetics in My Healing
After years of misdiagnoses, medical gaslighting, and failed treatments, I knew I had to look beyond conventional medicine.
It was time to explore nutrition, genetic testing, and alternative solutions—things that had been dismissed by every doctor I had seen.
And that’s when everything changed.
Part 3: Reclaiming My Health
HAIR LOSS: THE CANARY IN THE TUNNEL
Throughout my health journey, one symptom stood out as both distressing and emblematic: my progressive hair loss. I often referred to it as the “canary in the tunnel,” believing that if I could identify and address the root cause of my hair loss, it might illuminate the underlying issues affecting my overall health. Hair health is intricately linked to nutritional status and genetic factors, making it a potential indicator of systemic imbalances (1).
Yet, despite its significance, every single doctor I saw dismissed it.
When I first brought it up to Dr. Rosales, my cardiologist, he shut me down immediately.
“I’m a cardiologist. That’s not something I address,” he said flatly.
That was it. No follow-up, no referral, no curiosity about why it was happening.
The frustration I felt in that moment was unreal.
Medicine today has become so specialized that doctors can’t—or won’t—see the big picture. Each one has their tiny corner of knowledge, and if your problem doesn’t fit neatly into their specialty, they ignore it.
It shouldn’t be this way.
We live in an era where we have more scientific knowledge than ever before, yet our medical system is so fragmented that a clear and obvious problem—like my progressive, unexplained hair loss—wasn’t something any doctor thought was worth investigating.
Had one of them acknowledged it as a red flag, I could have found my answers much sooner.
But they didn’t. And I had to figure it out myself.
Seeking Comprehensive Care: Dr. Chris Cornelius
After exhausting my options with Dr. Rosales, I decided to give Western medicine one more shot and see if a General Practitioner (GP) could take a broader approach to my health.
On July 3, 2024, I met with Dr. Chris Cornelius, an extremely personable and well-respected GP.
I liked him immediately. He seemed genuinely interested in my case, and I had high hopes for our appointment.
Then he told me this would be our first and last meeting—he was moving out of state.
Just like that, my hopes were dashed.
During our one and only conversation, we discussed taking me off all pharmacology, since everything Dr. Rosales had put me on had failed to bring my blood pressure down to a normal range.
I asked him what else I could do myself, and he was honest with me:
“In terms of nutritional supplementation or deficiencies, I won’t be able to help you. Based on our conversation you may know more about that than I do.”
He gave me the green light to explore supplements like magnesium to help lower my blood pressure. He also told me I could stop taking lisinopril, since it had no known withdrawal effects.
But when I brought up my hair loss?
He gave me the same answer I had heard before—that it was something we could discuss later.
Later?
There wouldn’t be a later.
And even if there was, why wasn’t this something worth discussing NOW?
Once again, I left a doctor’s office knowing that if I wanted answers, I was going to have to find them myself.
A Return to Pharmacological Intervention: Dr. Justin E. Carricaburu
After stopping lisinopril, as per Dr. Cornelius’s advice, my blood pressure remained elevated, and my hair loss continued unabated.
Hoping to finally get a GP who would stay, I booked an appointment with Dr. Justin E. Carricaburu, who had taken over Dr. Cornelius’s practice.
On October 31, 2024, I sat across from him, hoping for a fresh perspective.
Instead, he put me right back on lisinopril—20 mg, half of what Dr. Rosales had prescribed.
And when I brought up my hair loss?
Same response.
“We can discuss that in the future.”
I was so tired of hearing that.
At this point, I knew:
Western medicine wasn’t going to give me the answers I needed.
Exploring Genetic Factors: The MTHFR Connection
Around this time, a close friend and hairstylist, who had been experiencing health issues similar to mine, shared her experience with genetic testing.
She had discovered a mutation in her MTHFR gene and had found relief through targeted supplementation. Intrigued and desperate for solutions, I began researching the MTHFR gene mutation and its potential link to Ehlers-Danlos Syndrome (EDS).
The MTHFR gene encodes an enzyme crucial for processing folate into its active form, 5-methyltetrahydrofolate (5-MTHF).
Mutations in this gene can impair folate metabolism, leading to elevated levels of unmetabolized folate in the bloodstream (2).
Studies have indicated a high prevalence of MTHFR polymorphisms among patients with hypermobility disorders, including EDS.
For instance, research from the Tulane Hypermobility and Ehlers-Danlos Clinic found that approximately 85% of patients with hypermobility exhibited MTHFR C677T and/or A1298C polymorphisms (3).
Initiating Targeted Supplementation
Motivated by these insights, I began supplementing with Methyl-Guard Plus in December 2024.
This supplement provides active forms of folate (5-MTHF) and vitamins B2, B6, and B12, supporting healthy methylation processes (4).
Recognizing that mineral imbalances could also play a role in my symptoms, I added copper bisglycinate and zinc bisglycinate to my regimen.
These bioavailable forms of minerals are essential cofactors in various enzymatic processes and can influence hair health and blood pressure regulation (5).
Observing Positive Changes
Within a week of incorporating these supplements, I observed a dramatic improvement:
• After One Month My hair completely stopped, reinforcing my belief that nutritional deficiencies were at the core of my health struggles. After Only 2 and half months my hair is growing noticeably thicker and stronger.
• One Week After Adding the Zinc and Copper my BP has been averaging 116/76 (2-16-25). I will be setting an appointment with a new GP to discuss where to go from here as it is now on the verge of too low.
Final Thoughts: The System is Broken
The fact that not one of my doctors recognized hair loss as a warning sign is both frustrating and infuriating.
The medical system is failing so many people by being too specialized, too pharmaceutical-driven, and too dismissive of holistic health.
Had I trusted my doctors completely, I would still be:
On multiple medications that weren’t working.
Losing my hair at an alarming rate.
Suffering from high blood pressure with no explanation.
Instead, I trusted myself.
And in doing so, I found the answers that Doctors refused to look for.
REFERENCES
1. Patel DP, Swink SM, Castelo-Soccio L. Nutritional Deficiencies and Hair Loss. J Clin Aesthet Dermatol. 2017. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6380979/)2. Prevalence of MTHFR Polymorphisms in EDS Patients. PubMed. 2023. (https://pubmed.ncbi.nlm.nih.gov/38523329/)3. Hypermobility & EDS Linked to MTHFR Mutations. ACR Open Rheumatology. 2024. (https://acrjournals.onlinelibrary.wiley.com/doi/10.1002/acr2.11667)4. Methyl-Guard Plus Overview. Dr. Hyman. (https://drhyman.com/products/methyl-guard-plus)CONCLUSION: NEVER GIVE UP—THE ANSWERS EXIST, EVEN IF THE SYSTEM CAN’T SEE THEM
If I had followed every doctor's advice without question, I would still be in pain. I would still be exhausted, still losing my hair, still watching my health deteriorate with no explanation.
But I didn’t stop searching.
I learned that "we’ve tried everything" is never true. Just because something hasn’t worked yet doesn’t mean the answer doesn’t exist—it just means you haven’t found it yet. Healing isn’t about blind trust in a system that treats symptoms instead of root causes. It’s about becoming your own advocate, asking the hard questions, and refusing to accept "normal" when your body is screaming that something is wrong.
This is not an anti-doctor message—there are incredible medical professionals out there. But even the best doctors are limited by the constraints of the system they work within. They often don’t have the time, the training, or the holistic perspective to connect the dots across multiple symptoms, systems, and underlying deficiencies.
That’s where you come in.
Your body is giving you clues. The question is: are you listening?
I wrote this because I do listen. Not just to my body, but to the countless others who have been dismissed, misdiagnosed, and left searching for answers. If my journey has taught me anything, it’s that you are not alone. There is a way forward—through science, critical thinking, and most importantly, persistence.
I am not a doctor, nor do I claim to be one. Everything I share is for educational purposes only. My goal is to empower you to think critically about your health, explore your options, and make informed choices with your own medical providers. You are responsible for your own well-being, and I encourage you to work with a trusted healthcare professional while also doing your own research.
If you’ve been struggling with unexplained symptoms, chronic pain, or feeling unheard in the medical system, I invite you to reach out. I don’t have all the answers—but I do know how to ask the right questions. And sometimes, that’s exactly where healing begins.
Never stop searching. Never stop questioning.
And never, ever give up. Because as Bruce Lee once said, "Pain will leave once it is done teaching you."
Stay strong. Keep learning. And remember: YOUR HEALING IS WORTH FIGHTING FOR.
-Shu
PROFESSIONAL BACKGROUND AND SERVICES
I am a certified mental health guidance coach with specialized training in neuropsychotherapy, cognitive behavioral therapy, and neuro-linguistic programming. My approach integrates these modalities to provide a unique and holistic form of support, helping individuals reclaim balance, overcome obstacles, and cultivate sustainable well-being.
In addition to my mental health expertise, I am a licensed massage therapy practitioner with extensive experience in evidence-based clinical practices.
My work focuses on assessing individual needs, educating clients, and empowering them to ask the right questions when seeking medical care. While I am not a medical doctor and cannot diagnose conditions or prescribe medications, I provide valuable insight into the mind-body connection and holistic wellness strategies.
I offer consultations tailored to each client’s needs, combining my diverse expertise to support their journey toward optimal health. For more information, check out some testimonials here
DISCLAIMER
The information provided in this article is for educational and informational purposes only and does not constitute medical advice. It is not intended to replace professional medical consultation, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this article. The author is not a licensed medical professional and is sharing personal experiences for informational purposes only. Reliance on any information provided in this article is solely at your own risk.