Medical Gaslighting

What is medical gaslighting?

According to ME-Pedia, medical gaslighting is when a “medical professional blames a patient’s illness or symptoms on psychological factors or denies a patient’s illness entirely”. As with common gaslighting, it causes the individual to doubt their own experiences.

Medical gaslighting occurs far too often (especially for women and people of color). According to Myheart.net, 78.5% of POTS patients have been told their symptoms were psychological. In a study by McManimen et al., 89.4% of ME/CFS patients reported experiencing a dismissive attitude from a healthcare professional.

Personal examples of medical gaslighting

• In college, I went to a doctor for sudden, intense fatigue. Before running any tests, she told me I probably was just depressed and offered to prescribe me an anti-depressant. I had mono.
• After several weeks of having GI issues in college, I went to see a Gasteroenterologist. He said, “You just want to get a colonoscopy, don’t you?” His insinuation was that I was an attention-seeker.
• After my tests came back normal early on in my POTS onset, an internal medicine doctor told me I must be “latently depressed”. Whatever the eff that is. I pushed back by explaining that I had mental health struggles in the past and could tell that this was different. The doctor used that information against me and doubled down.

• I wouldn’t necessarily accuse this neurologist I saw of medical gaslighting, but in his list of potential diagnoses “latent depression” was included, which added more fuel to my self-doubt.
• I went to the ER when I was scared by my symptoms several months into POTS onset. The ER doctor was very harsh with me, barking orders and making hurtful accusations. She told me that my issue was psychosomatic and/or I had “latent depression”.
• Earlier this year I went to a Gastroenterologist to address abdominal pain and bloating. He asked me questions in a rapid-fire way that made me feel self-conscious to be bringing up my concerns. I’m aware that there’s a degree of projection on my part because of bad past experiences, but this situation was more than that. This doctor was also a creep, but that’s a story for another day.

My recent experience- the aftermath of medical gaslighting

In this recent experience, I wasn’t gaslighted. However, the pain of my past experiences caused me to not advocate for myself properly.

To make a long story short, I’ve had bladder pain and intermittent hematuria since May. It took two months of pain to finally get diagnosed with kidney stones and a UTI.

Both the kidney stones and UTI presented in an atypical way. Therefore, these were tricky diagnoses and it is reasonable to expect some degree of diagnostic delay. When I finally ended up at a Urologist, he put me on a regimen of ibuprofen because he thought it would be unlikely for tests have any findings. I knew there was something going on, but instead of pushing for a test right away, I agreed to the approach that I felt was wrong. In my mind, if I pushed harder, the doctor may think I am an attention-seeking hypochondriac. I also spent weeks before getting the Urologist referral doubting myself and trying to ignore the pain. I was worried that it was all in my head or that I would be shamed by a doctor.

It sounds ridiculous, doesn’t it? But for those of us who have had experiences with medical gaslighting, this is all too common. Every time I go to the doctor, make an appointment, or even think about going to the doctor, I get intense anxiety. The fear is that I will feel ashamed like I did when I was gaslighted.

Update on my kidney stone/bladder situation

Since the problematic kidney stone is stuck and another sizeable one is still in my kidney, the recommended treatment is a ureteroscopy where the doctor reaches the stones and removes them by going up through the urethra/bladder/ureter. Then, they place a stent in the ureter to allow things to heal up properly.

I have had this procedure done many years ago and it still makes me shudder to think about. The doctor drew a picture to demonstrate the procedure and I almost dry heaved when he drew the stent. That cursed object caused me weeks of horrible pain both while it was in and after it was removed.

Luckily, I may have another option. In the past, my stones were made of uric acid, which means they can be dissolved with an oral medication called potassium citrate. There’s no way to know for sure if I have uric acid stones this time, but I think it is worth a try. I go back in three months for a follow-up CT to see if it worked. If the pain keeps up this way for more than a month, though, I may just opt for the procedure so I can move on. I don’t want to end up waiting three months, get the CT, find out I have to get the procedure anyway, and will have dealt with this pain for 5 months plus however long it takes to recover.

POTS-related side-note about my electrolyte usage and kidney stones

I am discontinuing Saltstick Vitassium, Drip Drop, and Liquid IV. They contain potassium citrate which could be overkill on the massive doses of potassium citrate I’m already taking for the kidney stones. Also, I learned from a test done years ago that excess sodium contributed to past kidney stones. I wondered if this high sodium intake would catch up with me, and now I know. Unless I struggle a lot without it, I do not plan to resume Saltstick Vitassium. I’ve suspected for a while that it isn’t a significant factor for me at this point. I only consume Drip Drop and Liquid IV occasionally, so I plan to resume that sporadic usage (if needed) when the kidney stones are resolved.

How I am coping with medical gaslighting

I see a therapist and was very grateful that I had an appointment when I was in a lot of pain but was anxious about advocating for myself. She used cognitive behavioral therapy techniques (cognitive restructuring) to help me re-frame my anxious thoughts. That gave me the courage to ask to move my Urology follow-up appointment sooner and ask the doctor to investigate further. Although I made missteps in the process, I am proud of myself for eventually doing the right thing. Medical anxiety is still with me (and may always be to some degree), but perhaps I can learn from this and do better for myself in the future.

It’s also helpful to discuss this with others who have experienced medical gaslighting and/or reading their stories. Knowing we’re not alone is healing.

Have you experienced medical gaslighting? How do you cope with it?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.