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
Picture: Gaslighting
Doctor
