Dismissed Lyme Symptoms: When Listening Matters More Than Testing

In my practice, I’ve seen patients suffer for years—not just from Lyme disease, but from being told their symptoms weren’t real.

They weren’t looking for sympathy. They were looking for answers. Instead, they were dismissed.

Lyme disease and medical gaslighting often go hand in hand—fueling misdiagnosis, emotional harm, and delays in care. And as recent research confirms, the damage isn’t just emotional—it’s clinical.

What Is Medical Gaslighting—and What Makes It “Medical”?

A 2024 review in Translational Gastroenterology and Hepatology defines gaslighting as:

“Behaviors inflicted on an individual which invalidate or call into question their ability to judge their own lived experience.”¹

In medicine, this can look like rushing to label symptoms as anxiety or stress—especially when labs are inconclusive or symptoms are nonspecific.

The review introduces a helpful distinction:

“Medical invalidation” refers to gaslighting behaviors that occur without intent—sometimes even with well-meaning efforts.”¹
“The results… are the same: the recipient is left feeling destabilized, and in doubt of their ability to make judgments.”¹

Whether it’s called gaslighting or invalidation, the harm is real.

Lyme Diagnosis Delays: A Patient’s Story

One of my patients—a 36-year-old mother of two—came to me after being told her fatigue, pain, and brain fog were “just parenting stress.” Her tests were inconclusive. She had been prescribed antidepressants, but nothing improved.

We reviewed her full history. Based on the clinical picture, I diagnosed Lyme disease and Babesia. Within months of treatment, she began to feel like herself again.

She didn’t need false reassurance. She needed someone to believe her.

Systemic Pressures That Fuel Medical Gaslighting

Many cases of Lyme disease and medical gaslighting don’t occur because a physician is uncaring—but because the system itself is under strain.

As the paper notes:

“Symptoms of burnout affect over half of physicians… increasing providers’ vulnerability to engaging in invalidating or gaslighting behavior.”¹
“The widespread implementation of the RVU-based compensation model has fueled the impersonalization of medicine.”¹

Lyme patients, with their complex and shifting symptoms, often fall through the cracks of this high-pressure system. A rushed visit, a few negative labs—and the door closes.

Clinical Validation: What It Looks Like in Lyme Care

In my practice, validation doesn’t mean agreeing with everything. It means taking symptoms seriously, even when the diagnosis isn’t yet clear.

Here’s what validation looks like in Lyme care:

1. 1. Ordering additional tests (e.g., Lyme titer, C6 ELISA, VlsE, or Western blot)
   2. Screening for co-infections like Babesia, Bartonella, and Anaplasma
   3. Recognizing limitations in current diagnostics
   4. Considering POTS, neuropsychiatric Lyme, and persistent symptoms
   5. Treating empirically when the clinical picture fits
   6. Following symptoms over time—not just snapshots

When patients feel heard, they stay in care. They get better.

When Labels Replace Listening

Many Lyme disease patients are mislabeled as “difficult” for asking questions or bringing in research. But that’s a red flag worth investigating—not ignoring.

“Patients bringing online medical information or requesting tests may be more likely to be perceived as challenging.”¹
“The odds of a patient being labeled as difficult were greater for those with stomach pain, fainting, loose stools/diarrhea, palpitations, and sleep problems.”¹

Those are the same symptoms I see every week in Lyme and co-infection cases.

Dismissal doesn’t just delay diagnosis—it breaks trust.

What Patients Can Ask When They Feel Dismissed

If your Lyme symptoms are being dismissed, here are questions you can ask:

1. 1. “Could my symptoms be from Lyme, even if my test was negative?”
   2. “Are we considering co-infections like Babesia or Bartonella?”
   3. “Can we retest or monitor if my symptoms continue?”
   4. “Would you consider treatment based on symptoms, not just labs?”

As the review states:

“The willingness to listen to [patients’] perspectives… is important for establishing trust.”¹

Frequently Asked Questions (FAQ)

What is medical gaslighting in Lyme disease?
Medical gaslighting occurs when a provider dismisses or downplays Lyme disease symptoms—often attributing them to psychological causes—without adequate evaluation.

Is medical gaslighting always intentional?
No. Medical invalidation may occur without malicious intent. The harm, however, is the same: patients are left doubting their own experience.¹

Why are Lyme disease patients more vulnerable?
Lyme often causes vague, fluctuating symptoms like fatigue, pain, and cognitive changes. When lab tests are inconclusive, patients are frequently told it’s “just stress.”

What should I do if I feel dismissed?
Keep a symptom log, ask direct questions, and seek out a clinician who uses clinical judgment—not just test results—to guide care.

Can I be treated for Lyme if my test is negative?
Yes. Lyme disease is a clinical diagnosis. Many cases require treatment based on symptoms, history, and physical findings—not just test results.

Final Thoughts: Validation Is Medicine

Medical gaslighting isn’t just a communication problem—it’s a clinical one. It delays care. It worsens outcomes. And in Lyme disease, it can cost years.

But there’s hope.

“Providers should remember the patient… holds multitudes of knowledge about their own body and lived experience.”¹

When we shift from dismissal to partnership, we unlock the potential to heal—not just physically, but relationally.

Let’s start by asking a better question:
“What are we missing?”

Related Resources

• Fatigue Can Be an Overlooked Sign of Lyme Disease – Dr. Daniel Cameron
• Babesia and Lyme — it’s worse than you think
• Chronic Lyme disease patients dismissed by medical community
• Treatment and Intervention for Lyme Disease

Citation

¹ Fuss A, Jagielski CH, Taft T. We didn’t start the fire…or did we?—a narrative review of medical gaslighting and introduction to medical invalidation. Transl Gastroenterol Hepatol. 2024; PMCID: PMC11535807