Oh my friends, I have a story for you all. It’s a tale that highlights the incredible importance of trusting your gut, especially when it comes to your health, and my firsthand experience with what I’ve come to call medical gaslighting.
The Trip That Started It All: Anxiety and Exhaustion
Back in April I went on a girls trip to Catalina Island. The whole week or two leading up to our departure I was experiencing quite strong anxiety about my dietary restrictions and overall lack of physical fitness. Over time, while working full time and trying to honor my body with rest, I had certainly become deconditioned and weak in comparison to the past. Knowing we could be hiking, not sleeping much, and being out of my usual safe meal routine, I was worried.
The trip ended up being an amazing time with friends and a much needed break from work. I enjoyed the warmth of the sun and fresh air immensely. However, as my anxiety dissipated, I felt exhausted. My sleep quality was poor, but I pushed through and enjoyed each day as much as I could.
A Troubling Reversion: Symptoms Emerge
Upon returning from the trip, I felt numerous symptoms begin to exacerbate slowly. I had been feeling so much relief with my diet and lifestyle adjustments. However, I was now gradually feeling a reversion of all my original grievances. Most notably, I was again struggling with consciousness in my commute both to and from work.
Just for fun (yes, I know this is weird) I took my blood pressure at my medical assistant job during a busy afternoon. It was 100/51. That was odd and unexpected, given that I was running around the clinic during this time. I began to monitor it over the next week, readings were not improving. They instead looked like 96/55, 99/54, and 90/60.
One day I felt so poorly, my supervisor saw my struggle and had me lay down briefly.
Seeking Answers: My Long List of Symptoms
After a few weeks of this, I reached out to my functional doctor asking about my symptoms. I figured they were related to my thyroid disease and could be some kind of flare-up. She directed me towards my PCP to get testing to determine the cause, not wanting to write it off as a thyroid flare-up.
I sent a message into my PCP’s office including the below list of symptoms and some BP readings:
- Lightheadedness not vertigo related
- Night sweats
- Struggle with energy while commuting to work
- Delayed period (42 day cycle)
- Constant fatigue
- Poor temperature regulation
- More headaches
- More anxiety
- Constipation
- Bloating and stomach pain even from water!!
- Aches and pains muscular and joint
- Salt cravings
- Dry mouth
The Dismissive Appointments Begin
The nursing staff at the office is incredibly receptive, and gave me a call after they received my message, saying that my PCP wanted me to be seen by her colleague, a nurse practitioner.
I was so eager for this appointment and finally getting to the bottom of why I was feeling like garbage again. Explaining my situation fully, I even brought my own questions. Since I complained of dizziness, my orthostatic blood pressures and EKG were taken. EKG was normal and BPs were still low. A referral to cardiology was ordered and I was moderately hopeful they would find something.
However, none of my other symptoms were addressed.
The cardiology appointment was brief and mostly inconclusive. But I did come out of it with one action step. I was taking a medication whose off-label use was for ADHD and anxiety, but the main use was to lower blood pressure. Okay, that makes sense, wean off of that and see how my BP changes.
The “Anxiety” Diagnosis and a Missed Opportunity
It was challenging, but over two weeks I stopped taking this medication. Lots of anxiety around my health remained, and I was not finding any improvement in any of my symptoms. I went back to my PCP office and reluctantly saw the NP again.
**** I want to make a clear disclaimer: I have no blame or negative interpretation of NPs or PAs as a whole. I just have had repeated poor interactions with this particular NP provider. ****
This time, I went in with a more structured idea of future directions. I researched different types of dysautonomia, seeing that some may help represent my experiences, and was prepared to ask about them.
Just as the first visit went, each of my concerns were brushed off, seemingly nothing of concern, despite my detailed description of how these symptoms were impacting my quality of life.
I brought up dysautonomia. “Lots of women have low diastolic blood pressure, you should probably hydrate more,” she said.
Mind you, I drink at least 60 oz of water a day with strong electrolytes.
Because I said the golden word “anxiety,” the SOLE SOLUTION to my complaints was to not just increase, but double my existing low dose of antidepressants. Since I had come off of one of my medications, the “obvious” solution would be to increase my anxiety medication to replace it, right? I was not interested in this. I do not want to continually increase my medication load at this young of an age if not absolutely necessary.
Despite describing a variety of symptoms, this provider wants to write them ALL off as anxiety? I just can’t believe that our medical system and providers who are supposed to be entrusted are not capable of searching for causes.
What about the rest of my concerns, you might ask? Nothing came of those. I left the visit feeling frankly infuriated.
Taking Matters Into My Own Hands: Advocacy and Validation
First, I was feeling frustrated. Why is it so hard to get down to the bottom of any health concerns nowadays? How was I going to find some kind of relief to the struggle I was experiencing each and every day?
Well, that solution has not yet come full circle, but I did decide to take matters into my own hands. If there is something I have learned in the last year of living with Hashimoto’s disease, it is that I have to trust my gut. When I think something is out of balance with my body, it probably is!
That same day, I went into work. I talked with some of our providers in the office who I trust, one of whom is a neurologist, and they both agreed it could be some kind of dysautonomia. The Neurologist did me the amazing favor of connecting me with a PA in a dysautonomia clinic who I will have an appointment with.
In this moment, I felt validated confiding in those around me to support my decision in seeking further care. They agreed that what I experienced at this appointment was certainly classified as medical gaslighting.
My Commitment: Fighting Medical Gaslighting
After this experience, I was so glad I have taken matters into my own hands to seek another way forward. My journey since that Catalina trip has been a winding one, filled with frustrating appointments and dismissive advice. But through it all, one truth has become crystal clear: you are your own best advocate.
This experience solidified my belief that we must be critical consumers of our own healthcare. It’s infuriating that so many providers seem quick to blame “anxiety” or “mental health” as a catch-all, especially for women and young people, rather than investigating root causes. We deserve to be heard, to have our symptoms taken seriously, and to receive comprehensive care that doesn’t just push more medication as the first and only solution.
I count myself fortunate to have the knowledge and resources to navigate this complex system, but I also feel immense empathy for those who don’t. Many patients lack the tools to question their care or advocate for themselves effectively. This is why, as a future healthcare provider, one of my biggest goals is to actively combat medical gaslighting. The patient-provider relationship is built on trust and vulnerability, and it’s essential that those in positions of power meet patients where they are, filling knowledge gaps and truly listening to their experiences.
We all deserve to be heard and to have our concerns thoroughly investigated. My hope is to see healthcare evolve beyond quick diagnoses and symptom management, moving towards a system that prioritizes understanding, empathy, and a genuine search for the underlying causes of illness.
As always,
Be well,
Emily
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