Fighting for Answers: Heather's Journey Through Chronic Illness, Misdiagnosis & Medical Gaslighting

How Heather had to push, fight, and self-advocate to uncover what doctors missed for years.

For the past year, my life has been shaped by symptoms no one could explain and a healthcare system that kept me trapped in limbo. I felt myself getting lost in medical gaslighting, endless misdiagnosis, and doctors who dismissed what I knew in my bones: something was very wrong.

I kept asking myself the same question over and over:

What do you do when your body is screaming that something is wrong, but no one will listen?

My health changed almost overnight in February 2024. My digestive system suddenly stopped working, and no one could tell me why. Months later, patch testing finally uncovered a diagnosis I had never heard of: Systemic Nickel Allergy Syndrome (SNAS). The diet changes helped restore some digestive function—but my neurological symptoms, dizziness, tachycardia, and circulatory issues didn’t go away.

If anything, they got worse.
Much worse.

One ER visit, with symptoms that felt like a heart attack, pushed a doctor to suggest something I had never considered: ME/CFS. While researching it, I stumbled across POTS (Postural Orthostatic Tachycardia Syndrome)—a form of dysautonomia known for causing severe chronic fatigue, heart-rate spikes, fainting, and exercise intolerance.

Desperate for answers, I bought a smartwatch, ran the Poor Man’s Tilt Test, and collected my own data—because no one else seemed to be looking closely enough. An internal medicine specialist later confirmed the likelihood of POTS symptoms, but told my doctor not to investigate for another 6–12 months. His “treatment plan” consisted of advice I could have found on Google.

So for nearly eight months, I’ve been self-managing a condition often compared to congestive heart failure in severity.

I’ve been living in survival mode.

But my health story didn’t start in 2024. The earliest signs go back five years.

Everything began with what should have been a simple knee injury—except it wasn’t. My fibula slipped out of place, and my knee never healed normally. This was the first sign of my hypermobility, although I didn’t recognize it at the time.

If I didn’t have 18 years of experience as a registered massage therapist, I might never have recognized those early red flags.

I pushed my doctor for a neurology referral long before she thought it would be approved. If I hadn’t fought for that MRI when I did, genetics would have dismissed me with Hypermobile Spectrum Disorder (HSD)—a label that offers zero monitoring or support.

Because my MRI revealed several cysts on my spine, the genetics team ordered bloodwork to check for more advanced connective tissue disorders, such as:

• hEDS (Hypermobile Ehlers-Danlos Syndrome)

• Marfan Syndrome

• Loeys-Dietz Syndrome
  
  

This matters. So many people with HSD or hEDS are dismissed because these conditions don’t have a clear genetic marker. They’re left suffering with chronic pain, joint instability, nerve symptoms, and dysautonomia, without proper care.

I would have been one of them—if not for my background in medical science…
and honestly, a massive dose of luck.

My connective tissue has been struggling for years. These last two years, everything hit a wall. Learning about the cysts on my spine finally made the puzzle pieces fit.

But getting these cysts treated?
That’s an entirely new battle.

Medical Dismissal Made Everything Worse

The medical gaslighting I experienced along the way caused lasting harm.

An orthopedic specialist dismissed my knee injury entirely. He ignored the research I brought, refused to examine it properly, and wrote in my file that I agreed nothing was wrong. I cried in front of my kids when I discovered that note—especially because I was still using a cane. His report cut off my physiotherapy permanently.

I went to dermatology for chronic fingertip peeling and itching, and they recommended patch testing to look for answers. That test ended up revealing the systemic nickel allergy that explained so many of my symptoms.

So when an allergy specialist later told me that Type IV hypersensitivity reactions “aren’t real allergies,” and that dermatology shouldn’t even bother with patch testing, I was stunned. Without that test, I never would’ve learned what was actually happening in my body.

I waited two years for that appointment.
If not for patch testing, I never would have learned about systemic nickel allergy, and I never would have gotten my digestive system back on track.

Meanwhile, the Canadian healthcare system is collapsing.

Two- to three-year waitlists are normal.
Mammograms: one year.
Gynecology: a year and a half.
Connective tissue specialists: two to four years.

In that time, symptoms worsen. People deteriorate. Some conditions turn irreversible.

Doctors hesitate to make referrals because they know the system can’t handle the demand. Files get lost. Faxes disappear. Patients with complex conditions—like POTS, autonomic dysfunction, SNAS, chronic fatigue, and hypermobility disorders—fall through the cracks.

I haven’t been waiting.
I’ve been fighting.

Every referral, every test, every inch of care has been something I had to push for, again and again. And even now, doctors ask me to choose which symptoms matter most—because I can’t get help for all of them.

I am exhausted.
Deeply exhausted.
But I’m still here.

The One Good Thing That Came Out of This: My Podcast

Through all of this, I started the North Star Health Podcast. It began as a simple idea—a space where I could share openly while I’m still learning, still struggling, still figuring things out.

My goals:

✨ Raise awareness about chronic illness, medical gaslighting, and diagnostic delays
✨ Help others feel seen, validated, and less alone
✨ Share real experiences with POTS, dysautonomia, hypermobility, chronic fatigue, and more
✨ Advocate for better research, better care, and better understanding

If telling my story helps even one person—just one—feel a little less alone… then every vulnerable moment is worth it.

I may not have answers yet.
But I have my voice.
And I’m using it.