When They Don’t Believe You: Dealing with Gaslighting from Doctors and Insurance Companies

🩺 When They Don’t Believe You: Dealing with Gaslighting from Doctors and Insurance Companies

By Susan Q. Knittle-Hunter, Periodic Paralysis Network

Living with Periodic Paralysis is already an uphill climb — but when the people who are supposed to help us, like doctors or insurance representatives, gaslight us instead, it adds a cruel layer of trauma and invalidation. Many of us have been told “It’s all in your head,” or “There’s nothing wrong with you,” or worse, have been denied the care or coverage we desperately need — even with a clear diagnosis.

So how do we cope? How do we protect ourselves and still seek the help we need?

What is Medical Gaslighting?

Medical gaslighting occurs when a medical professional dismisses, downplays, or denies a patient’s reported symptoms, causing the patient to question their reality. It’s especially common in rare diseases like Periodic Paralysis — and even more so when we don’t fit into a doctor’s textbook understanding.

This can look like:

• Refusing to run tests or review lab results seriously
• Attributing symptoms to anxiety, aging, or weight
• Denying a diagnosis given by a specialist or geneticist
• Suggesting you’re "doctor shopping" or “seeking attention”
• Insurance companies denying claims without review or citing “not medically necessary”

In Living with Periodic Paralysis: The Mystery Unraveled, I shared my own journey of being dismissed for decades, despite clear symptoms. It wasn’t until I did my own research and pushed back that I got answers.

You are not alone.

---

Strategies for Coping and Advocacy

Here are ways to cope with and respond to medical gaslighting:

1. Know Your Diagnosis and Learn the Science

Equip yourself with knowledge. Bring clear documentation — including genetic test results, abnormal lab work, and reputable sources from medical literature (not just rare disease organizations with potential conflicts of interest). From The Periodic Paralysis Guide and Workbook: “You must become the expert on your own condition. Doctors may not be educated in this area — but you can be.”

2. Document Everything

Keep a journal of symptoms, triggers, test results, and appointments. Ask for copies of all lab results, even if “normal.” What’s normal for others may be dangerous for us.

Document conversations with insurance companies. Note dates, times, names of representatives, and call reference numbers.

3. Use Your Emergency Card and Medical Summary

Create and carry a clear Emergency Medical Card (see our template and books), listing:

• Diagnosis: Andersen-Tawil Syndrome, Hyperkalemic Periodic Paralysis, etc.
• Dangerous medications to avoid
• Emergency instructions
• Emergency contacts

Many members have found this invaluable when in crisis or needing urgent care.

4. Bring an Advocate

A trusted friend or family member can take notes, speak up, and bear witness if a doctor dismisses you. This helps shift the power dynamic.

5. File a Formal Complaint

If you’re mistreated, you have the right to file a formal complaint with:

• The clinic or hospital’s patient advocate or ombudsman
• Your state’s medical licensing board
• Insurance regulatory agencies (for denial of claims)

Even if nothing changes immediately, this builds a record.

6. Find a Doctor Who Listens

They do exist — especially outside of neurology (PP is a mineral metabolic disorder). As I’ve written in my books, any doctor who takes the time to read and understand can help. Consider integrative, metabolic, internal medicine or functional medicine practitioners. Interview new providers before committing.

---

A Note About Insurance Companies

Insurance gaslighting can be even more cold and impersonal. If your diagnosis is considered rare or “experimental,” you may need to:

• Appeal decisions in writing (you have a legal right to appeal)
• Include a clear letter from your doctor (template available in the Workbook)
• Cite specific lab results and genetic tests
• Refer to ICD codes (you can ask me for these based on your subtype)

Some members have had success with state ombudsman offices or patient advocacy lawyers.

---

You Are Not Alone

If you feel unheard, invalidated, or dismissed — please reach out to us. Share your experience in the support group. Our stories matter. In A Bill of Rights for Periodic Paralysis Patients, I wrote:

“We have the right to be believed, to be treated with dignity, and to receive safe care — even if our illness is rare.”

You don’t have to tolerate gaslighting. You can advocate for yourself. And we, as a community, will stand beside you.

---

Further Reading & Resources:

• Living with Periodic Paralysis: The Mystery Unraveled
• What is Periodic Paralysis?: A Disease Like No Other
• The Periodic Paralysis Guide and Workbook: Be the Best You Can Be Naturally
• A Bill of Rights for Periodic Paralysis Patients
• Blog Article: How to Advocate for Yourself or a Loved One
• Emergency Card Template

With love,

Susan Q. Knittle-Hunter

Founder, Periodic Paralysis Network

Picture: Gaslighting Doctor