Medical gaslighting is a relatively new term. The rise of this phrase has been mostly driven by social media posts, like those written by members across Inspire and on other platforms. There is some debate about the exact definition of medical gaslighting. However, it can be loosely defined as a patient feeling dismissed or diminished by a medical professional, possibly leading to negative healthcare outcomes.

In some cases, medical gaslighting can have disastrous consequences. Black women are 2.6 times more likely to die from complications due to childbirth than white women in the United States. One theory as to why points to race- and gender-related medical gaslighting. The suggestion is that Black women’s pain and symptoms simply aren’t responded to with the same level of urgency as White patients. As a result, they suffer in much higher numbers from fatal preeclampsia and other childbirth complications that are preventable with proper and timely treatment.

One powerful example of medical gaslighting came to national prominence when tennis star Serena Williams described her own experience following the delivery of her daughter in 2018. An article in Vogue describes Williams’ medical gaslighting, and the self-advocacy that saved her life: 

“The next day, while recovering in the hospital, Serena suddenly felt short of breath. Because of her history of blood clots, and because she was off her daily anticoagulant regimen due to the recent surgery, she immediately assumed she was having another pulmonary embolism. (Serena lives in fear of blood clots.) She walked out of the hospital room so her mother wouldn’t worry and told the nearest nurse, between gasps, that she needed a CT scan with contrast and IV heparin (a blood thinner) right away. The nurse thought her pain medicine might be making her confused. But Serena insisted, and soon enough a doctor was performing an ultrasound of her legs. ‘I was like, a Doppler? I told you, I need a CT scan and a heparin drip,’ she remembers telling the team. The ultrasound revealed nothing, so they sent her for the CT, and sure enough, several small blood clots had settled in her lungs. Minutes later she was on the drip.”

Serena knew her symptoms and her risks, and yet, both a nurse and a doctor at the hospital questioned her self-diagnosis. This is an example of medical gaslighting, and it could have ended Williams’ life. 

There has not been adequate research to understand the prevalence of medical gaslighting as a cause of negative health outcomes. Most research available on the National Institutes of Health PubMed database discusses medical gaslighting in the context of healthcare providers feeling gaslit by the healthcare system.

Because of this, social media platforms like Inspire have shaped the conversation around medical gaslighting, with posters offering their own stories and sharing tips for how to be “taken seriously” by healthcare providers. Recently, an Inspire member sent this email to the Inspire team: 

“I read…an article on lupus and mental illness on the Lupus Foundation website. I'm not sure why it is not mentioned why [mental illness] is underreported. I would love to tell my doctor I have anxiety over my health not improving but guess what happens as soon as you do? Any little problem you have will be attributed to anxiety. When my symptoms first appeared I was naive to this fact and it was MONTHS before my PCP referred me anywhere as she thought my lupus was anxiety and depression, without doing any tests to investigate…I have, in fact, in the year 2022, had an older male physician tell me nothing was wrong with me, I just needed a boyfriend. I had a neurological disorder. I am now facing this issue again, where I am not being taken seriously with my heart symptoms…I really wish more attention would be brought to how poorly us chronically ill younger women are treated because my stories are just a raindrop in a bucket. I guarantee you if you took a survey at least 90% of females [suffering from autoimmune conditions] have been treated like this multiple times.”

On Inspire, members with various health conditions connect about the medical gaslighting they have experienced: 

“I have definitely experienced gaslighting in the past. Gaslighting from my healthcare providers not only made me feel sad and upset but it also had negative consequences to my health. Talking to my family and friends about this helped me get through it. I have now learned to speak up if I don't agree with something and seek second opinions as necessary.”

“I've been working on setting up specialist appointments [for my mast cell activation syndrome (MCAS)], but it's been a struggle to find doctors who are willing to treat me/who know how to treat MCAS and get the appropriate documentation from my PCP who used to treat me (she left). Yesterday I had another anaphylactic reaction. Since the paramedics had to pick me up from my mental health treatment center, I think they thought I was just crazy. The paramedic literally asked me if I was faking it since he was about to give me more Epi. I think he talked to the ER because I was put in a bed and not given any treatment (I didn't even get a blood test or put on a monitor). They discharged me 3 hours later saying that I wasn't going to have another reaction (even though I had the reaction to food). I ended up having a reaction on the way home and then a second reaction 5 hours after that. I'm hoping the specialists I'm seeing in a couple of weeks have answers. How do y'all deal with the medical gaslighting that happen at ERs and at PCPs that don't understand MCAS and its related comorbidity?”

Some members offer their own tips for how to feel more heard by a care team in a medical setting. Here is a short list of recommendations: 

• Carry a medication list with you at all times, especially if you are prone to emergency episodes or symptoms as a result of your condition. Consider getting a medical alert bracelet.

• Trust your instincts. If something in your gut feels off about how a healthcare provider is treating you, find another provider or seek a second opinion. 

• Conversations with healthcare providers should be a two-way dialogue, not a one-sided lecture or monologue.

• If your complaints are commonly brushed off as stress, depression, or anxiety, insist on speaking to someone who will take your symptoms seriously. 

Do you have experiences with medical gaslighting, or tips for people who might be struggling with it? Start a post in your Inspire community now.

Disclaimer 

Member comments have been lightly edited for length and clarity. This content is for general informational purposes only and does not necessarily reflect the views and opinions of any organization or individual. The content should not be used as a substitute for professional medical advice, diagnosis, or treatment. Please consult your healthcare provider about any questions you may have regarding a medical condition.