How To Avoid Medical Gaslighting: POTS Edition

Living with Postural Orthostatic Tachycardia Syndrome (POTS) can be incredibly frustrating—especially when you're not taken seriously by medical professionals. Unfortunately, many people with POTS experience medical gaslighting, where their symptoms are dismissed, minimized, or misattributed to anxiety, stress, or simply "being out of shape." If you've felt unheard or invalidated, you're not alone.

Here are tips to help you advocate for yourself and communicate your symptoms effectively to get the care you deserve.

1. Come Prepared with Symptom Logs

Keeping a detailed symptom diary detailing each symptom day can help show patterns. Include:

• Date and time of day symptoms occur

• Triggers (e.g., standing, heat, meals)

• Specific symptoms like dizziness, heart palpitations, fatigue, or nausea. Any symptom you're having should be logged even if it doesn't make sense.

• How you feel that day. Be honest; if you're feeling anxious that day then write it down.  If you're having a good mood day, write that down too! This can help your physician understand the mood tied to the day and potentially rule out psychological diagnoses.

Objective data is harder to ignore. You can even bring in heart rate and blood pressure logs showing changes from lying to standing—classic signs of orthostatic intolerance.  These would be perfect to include in your symptom diary.

2. Use Clear, Specific Language

Instead of saying, "I feel weird when I stand up," try:

• "My heart rate jumps from 70 to 120 bpm within two minutes of standing."

• "I feel lightheaded, my vision gets blurry, and I need to sit down to avoid passing out."

Use concrete numbers and descriptions to avoid misinterpretation and emphasize the severity of your symptoms.  A great way to show this is by doing the Poor Man's Tilt Table Test!

3. Bring Supporting Documentation

If you’ve already seen a specialist, undergone a tilt table test, or had other relevant evaluations, bring copies of your medical records with you. Having documentation helps establish credibility and gives your provider important context.

You can also bring educational materials from reputable sources like:

• Dysautonomia International

• Cleveland Clinic on POTS

4. Bring a Support Person

Sometimes having a friend or family member present can make a big difference. They can:

• Confirm your symptoms and how they affect daily life. They can also help you keep everything on track in listing all your symptoms and concerns so nothing is forgotten.

• Help advocate on your behalf if you're feeling overwhelmed

• Take notes so you remember what was said during the appointment

5. Don’t Be Afraid to Switch Providers

If a doctor consistently dismisses your symptoms or refuses to explore a POTS diagnosis, it may be time to move on. Look for providers who specialize in autonomic disorders or are willing to learn and listen.

You deserve a care team that takes your concerns seriously.

6. Know What to Ask For

Sometimes doctors don’t know much about POTS and need guidance. Be ready to ask for:

• A tilt table test or active stand test

• Referrals to cardiologists, neurologists, or dysautonomia specialists

• Recommendations for hydration strategies and medications, if needed

NormaLyte has been clinically proven to help manage symptoms of POTS.  You can share with your doctor the clinical study that discusses this!  They are welcome to reach out to us directly to ask for a copy of the study.

7. Mention Effective Tools That Help You

When you mention things that improve your symptoms—like increased salt and fluid intake, compression garments, or electrolyte supplements—you reinforce the legitimacy of your condition.  These would be great to include in your symptom diary!  Days/times you've taken it with notes about the effectiveness on how you feel afterwards.

If NormaLyte's Oral Rehydration Solution (ORS) helps stabilize your symptoms, say so! NormaLyte is formulated to support people with POTS by helping maintain blood volume and improve hydration, especially during symptom flares or hot weather.

NormaLyte Is FSA/HSA Eligible & May Be Covered by Insurance

If your doctor is open to discussing treatment options, ask them to write a prescription for NormaLyte. That prescription, along with a Letter of Medical Necessity, may help you get it covered by insurance.  Please keep in mind that NormaLyte is only available over the counter, but the prescription would help with the Letter of Medical Necessity.

Good news: NormaLyte is eligible for purchase with FSA or HSA accounts! You can also find a downloadable Letter of Medical Necessity template on the NormaLyte website.

This not only helps with affordability—it also reinforces to your doctor that hydration is a medically relevant part of managing your POTS symptoms.

Final Thoughts

Dealing with medical gaslighting while navigating a POTS diagnosis can be draining—but you are not alone, and your symptoms are real. With the right communication, documentation, and support, you can advocate for yourself and get the care you need.

Stay empowered, stay hydrated, and never be afraid to seek a second opinion.

Need help staying hydrated through it all? Check out NormaLyte’s full line of ORS products made specifically with the dysautonomia community in mind.

What has been your experience with getting a diagnosis?