Trigger warning; the examples of medical gaslighting highlighted in this post may be distressing to some.
There is growing awareness around the prevalence of medical gaslighting, especially amongst female patients. Last week tens of thousands of people took to Twitter to share their horror stories of neglect from medical professionals under the hashtag #PatientsAreNotFaking, following a disturbing viral video that was posted mocking certain patients.
However, medical gaslighting is not a new phenomenon, it has been going on for centuries. Historically, women have always been pegged “hysterical” and “mental” by men and the predominantly patriarchal medical profession. And I’m sure many of my readers have their own personal stories of disbelieving doctors.
But what is medical gaslighting, and how does it pose a risk to patients?
What is gaslighting?
Gaslighting is a tactic in which a person or entity, in order to gain more power, makes a victim question their reality. Anyone is susceptible to gaslighting, and it is a common technique of abusers, dictators, and narcissists.
The term comes from the 1938 stage play Gas Light, in which a husband attempts to drive his wife crazy by dimming the lights (which were powered by gas) in their home. When his wife points it out, he denies that the light changed.
Gaslighting is an extremely effective form of emotional abuse that causes a victim to question their own feelings, instincts and sanity, which gives the abusive partner a lot of power. Once an abusive partner has broken down the victim’s ability to trust their own perceptions, the victim is more likely to stay in the abusive relationship.
I have experienced gaslighting myself in past relationships, from people who I regarded as friends, on social media, from employers, and most worryingly from medical professionals.
Medical gaslighting
While gaslighting is manipulating someone into questioning their own sanity, medical gaslighting is manipulating a patient into thinking that they are exaggerating their own condition, causing a patient more and prolonged pain, putting their well-being or even their lives at risk.
Unfortunately, evidence shows medical gaslighting is so common, the mistreatment and neglect of patients, particularly women reporting symptoms like pain, is not the exception, but the rule.
The consequences of gaslighting can be very serious. We are often accused of being hypochondriacs or unreliable witnesses of our own experiences that results in subsequent doctors dismissing our symptoms. Often treatment is withheld, the condition gets worse, and we suffer for years, or die.
Medical gaslighting can take many forms. Do any of these sound familiar to you?
- Minimising debilitating or dangerous symptoms – “Your pain can’t be that bad“
- Blaming symptoms on mental illness – “It’s all in your head”
- Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear“
- Refusing to order important tests or imaging work. – “I know you don’t have “xyz”, I do not need an MRI to tell me this. I know how to do my job“
- Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?”
Offensive TikTok video causes uproar
As I have briefly mentioned, a TikTok video showing someone posing as a nurse mocking patients, went viral last week.
For those of you that haven’t seen the Tik Tok video, it shows “D Rose” posing as a patient dressed in a hospital gown, struggling to breathe and in distress. It then cuts to D Rose dressed as a nurse. Instead of helping the patient, she starts dancing in time to her laboured breathing. It then cuts back to her as a patient; she suddenly stops “pretending” to be ill, folds her arms and glares at the nurse for being found out as a faker.
The Caption reads; “We know when y’all are faking 😂😂”
I will not be linking the video in this post. It already has over 20 million views, and 131k likes, and I refuse to contribute to that.
This video angered many, and rightly so. Tens of thousands of people took to Twitter to share their horror stories of neglect from medical professionals, under the hashtag #PatientsAreNotFaking, created by @Imani_Barbarin, and it was grim reading.
Imani Barbarin initial reaction to the video, which launched the hashtag, summed up how many of us felt;
“That video of the nurse dancing not believing patients has stirred up a lot of trauma for many in the disabled community and BIPOC communities. People get killed because of that mentality. You did a whole video to tell us you’re bad at your job. #PatientsAreNotFaking” @Imani_Barbarin
Here are a few examples of medical gaslighting which were shared on Twitter;
“wife went to the ER. Bad headache for days. Nausea. Tinnitus. They did blood tests and imaging. The doctor said, “we can’t find anything,” Then to me, “are you paying her enough attention?”. She stood, collapsed. Later dxed with intracranial hypertension. #PatientsAreNotFaking” @SimonoffBob
“I bled through every feminine products I used, within an hour. My doctor at the time tried to “fix” the bleeding with birth control. I have stage four endometrial cancer. #PatientsAreNotFaking” @Sarah_Samedi
“I was told multiple times over the course of several weeks in & out of the emergency room that I was having panic attacks & needed to calm down/relax. Turns out, it’s extremely hard to relax when you’re having your first attack from Multiple Sclerosis (MS).
#PatientsAreNotFaking” @tori_saylor
“I was accused of being a drug seeker in a rural MN ED because I came in with back pain at 2:30am that made me sob uncontrollably. Months later I would finally be listened to by a female nurse practitioner who diagnosed me w/stg 4 Hodgkin’s lymphoma at 19 y/o. #PatientsAreNotFaking” @realslimsheyla
“The first rheumatologist I went to 4 years ago called Child Protective Services on my family because she believed I was faking my pain to get my parents medication. I’ve now been diagnosed with EDS, rheumatoid arthritis, and fibromyalgia. #PatientsAreNotFaking” @JeninaB12
“I was having rectal bleeding, severe weight loss & chronic constipation for a year. Told it was periods & an eating disorder (I was recovered). Sent home from A&E three times, told to eat bananas. Bowel perforated, large intestine removed & a stoma bag. #PatientsAreNotFaking” @hattiegladwell
“In the ER w/3rd degree burns to my leg. All of a sudden, couldn’t breathe, hands were swollen, thumbs felt like they were going to snap off. Told to relax & calm down. That I was hyperventilating. It was an anaphylactic reaction to morphine. #PatientsAreNotFaking” @GraceCordovano
“I’ve interviewed 60+ folks with dx’ed chronic illness about their entire health histories. I am not exaggerating when I say that every. single. one. of those patients was implicitly or explicitly accused of faking before getting a dx. #PatientsAreNotFaking” @bennessb
The video creator responded to this criticism;
“D Rose” showed no remorse for the distress she caused and refused to apologise or take down the video. She wrote; “I absolutely will not be bullied into apologising or deleting a video because some people disagree with me.”
This response was very disappointing. Rather than reading the tens of thousands of replies to get an understanding of why the video was so offensive and dangerous to those of us living with chronic illness who have experienced medical gaslighting first-hand, she completely dismissed our concerns.
While thousands of people took to Twitter to share their horror stories of neglect from medical professionals, some doctors felt the need to push back with the hashtag #NotAllDoctors – completely missing the point. When will medical professionals believe the true extent of medical gaslighting, and the danger it places on the welfare and lives of patients?
Why this video is so dangerous
I think the problems highlighted by this disturbing video are pretty obvious, but for those that still believe it was “just a joke” and we “shouldn’t take it so seriously,” please let me explain in simple terms; This video, and others like it, put patients lives at risk. Patients are not punchlines.
This is way more than just a distasteful ‘joke’ that people find insulting. It exposes a huge crack within medical systems that patients fall through everyday. Pain is disregarded, illness disbelieved, and people end up losing their lives thanks to attitudes like this nurse.
The issue is far more serious in marginalised communities. Imani Barbarin explained:
“So many black, Indigenous, people of colour, disabled people, trans people, queer people have very difficult experiences at the doctor’s office with (getting) nurses, medical professionals to believe us about our symptoms and diagnoses,” she said, adding that the video being retweeted so many feeds was “very traumatic for a lot of disabled people.”
Imani Barbarin
What’s most disturbing, is the video has over 130k likes. This sadly proves the full extent of the problem, and the misconceptions about patients who seek medical help – people truly believe many of us are just faking our symptoms, and drug seeking. It really says a lot about how people view sickness and disability, and why the chronically ill are perpetually mocked and marginalised.
My own experiences with medical gaslighting
Before being diagnosed with ME/CFS, my physical symptoms were dismissed for years as anxiety and depression, by numerous GPs. Doctors just kept prescribing antidepressants. Unsurprisingly they didn’t help, in fact the side effects made me a lot worse. No matter how many times I explained my physical symptoms, I was told it was “all in my head”.
In my teenage years and early twenties my ill-health was solely blamed on my weight, even recurring tonsillitis and migraine which both had a devastating impact on my health.
I have been told by doctors that I’m exaggerating my pain, and that my anxiety was causing palpitations and chest pain which was later diagnosed as a heart condition. I’ve been mocked and accused of being a hypochondriac and attention seeker. And frequently been told there’s nothing wrong with me and sent home. Read more about my experiences here.
We are not faking it! – please believe us
Of course, this disbelief is not just isolated to the medical profession. The wider perception that many chronically ill people, especially those with invisible illnesses, are just faking it, impacts on our day-to-day lives too. We are confronted by members of the public for using disabled parking spaces. We are mocked for requesting priority seating on public transport. We are accused of faking our disability if we dare to stand up from our wheelchairs in public. We are targeted as scroungers if we apply for disability benefits that we are rightly eligible for.
The fact that this video got so many likes is a depressing reminder of the true extent of the neglect we face as patients. Videos like this one perpetuate the myth that the majority of patients seeking medical treatment are just faking it to get attention, or drug seeking. It’s upsetting to see this in 2019 but patients are still mocked and blamed by so many medical professionals, and sadly the general public too.
When will doctors understand the dangers of disbelieving patients? When will the true extent of medical gaslighting be highlighted. When will this medical neglect be finally addressed? When will people fully understand the power of the words “I believe you”?
Thankfully some medical professionals acknowledged the problem and tweeted in support of patients. Colleen Farrell, MD wrote;
“I would encourage anyone working in healthcare to read the stories of #PatientsAreNotFaking. Our hidden curriculum in medicine often teaches us to discount patient symptoms. It’s dangerous and unethical. Listen to your patients.”
My final word on this is to anyone within the medical profession who still doesn’t see the harm caused by videos like this, or the full extent of the problem with regards to medical gaslighting:
Don’t doubt your patients. Believe us. We don’t want to be in your hospital. We just want fair treatment. Your disbelief and neglect costs lives. Please take a few moments to read through the devastating stories under the hashtag #PatientsAreNotFaking – these are real people who have been let down by your profession.
Have you been a victim of medical gaslighting?
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Fantastic article!! I have lost count of how many times my pain has been dismissed or ignored by emergency rooms. For me it began after my hysterectomy. The pain I had prior returned and for two years I fought for my life. I was told that it was in my head or that it was normal considering my other chronic illnesses, but I knew it was neither. Twenty surgeons dismissed what surgeon 21 (the one and only who agreed that something was amiss) discovered which turned out to be a mess left behind from my hysterectomy. More recently, earlier this year I was told to lose weight for upper abdominal pain which was later discovered to be caused by multiple broken ribs. I have lost all faith in emergency medical care.
Thank you. I’m so sorry you have been treated so badly. It’s not just medical neglect – it’s abuse.
I have been suffering with chronic abdominal pain for the last 10 years. Not only are the “professionals” unable to find the cause, now I’m what is typically known as “spotting” (I saw it on Wednesday and immediately called my P.C.P…I went through menopause also 10 years ago. I saw my favorite P.A. on Friday and she had the Women’s Clinic call me to schedule an ultrasound. I go in on Monday. To say I’m quite literally scared to death is a huge understatement. I’m turning 56 in February, have a wonderful daughter who is in her final year of high school and a loving and extremely supportive husband who would love to see me 100% pain free, and now this. I’m still “spotting” but it hardly amounts to anything in terms of a menstrual period. I’m not soaking multiple period pads, no clots or heavy bleeding at all. Very minimal. I’m obviously concerned, because I shouldn’t have any kind of blood coming from there. My B.P. is within normal limits and I weighed in @ 126.6…which is normal for being 5′ 4″ and small boned. I’ve had multiple CT scans, x-rays, a Fistulagram and even had x-ray guided lumbar injections that were supposed to help with not only my abdominal pain, but the pain I was having in my pelvic area. It was a big, fat failure. The only thing that worked were the lidocaine/marcocaine (sp?) shots I was given to numb my lower back so I wouldn’t feel the injections. Once that wore off, I was right back where I started before the procedure. No pain relief at all. I’m a medical conundrum. I’m not the typical chronic pain patient and nobody knows how to help me handle my pain. I take Oxycodone 15 mg. immediate release tablets, with little or no pain relief at all. I’m hoping that Monday’s procedure will finally give me the answers I’ve been looking for these last 10 years.
I have been gaslighted by family, friends and medical professionals, abandoned and left for dead. I had a unrecognized severe, life-threatening adverse drug reaction to a medication taken as prescribed. I was told my symptoms were an emerging psychiatric illness it could not possibly be due to a medication they prescribed, forced into a psychiatric facility and medicated against my will, which caused catastrophic permanent damage.
I have objective corroboration from multiple doctors of this . I am now permanently disabled because I was gaslighted and not believed.
I’m sorry you suffered such inexcusable neglect. It angers me so much to hear all these horrific stories. Take care
god bless you i understand went through it myself but had the good sense to stop meds asap 10 months later fighting every day but may be winning told doctor about co dependency and gas lighting and challenged it they said ok ……… everyone in that unit was gas lit from narcissistic abuse syndrome and the drugs locks them in for life………….
I am so sorry Grace to read this. It would be lovely if some humility were shown.
Thank you for posting this article. I went to 12 doctors who dismissed my pain as GI upset, being a hypochondriac, ear infection, allergies, and drug seeking (even though I NEVER asked for pain meds). I was despondent and in 24/7 pain that entailed being unable to sleep, eat or move without severe pain. Doctor #13 took less than 5 minutes of palpating my abdomen before sending me to imaging. Two weeks later I had a kidney removed and started 18 months of chemo and radiation. If I had listened to any of the first dozen doctors I would’ve went home and died. It was traumatizing being belittled at and ridiculed by all of them. I lost faith in myself and the majority of the medical community.
I’m so sorry you experienced such neglect and trauma. How are you doing now?
I have hair again which is nice and physically I’m better. The surgery caused internal adhesions which are mostly on the uncomfortable side of the spectrum unless I move then they become painful. I’m grateful to still be here and to have found, at least briefly, my unicorn doctor (he passed from cancer).
Never give up. I’m living proof that be it 10, 20 or 30 doctors keeping listening to your body until someone listens to you.
I am at home praying I don’t die.
I was injured by a medication.
No help for me. No doctors.
I am alone and in horrible pain and terror
They will no acknowledging the injury.
So because I have no doctor backing me
My friends and family have gone away.
Akathisia, neuropathy, agoraphobia, tinnitus
Just to name a few. I was a normal person.
Untill I took their coolaid.
God help us all.
I wish I could tell you my story, but it is so long. But I realise now I need to write it down.
I understand that!! I have been going through this my gp since 2019, so so many examples. Stay strong!
Had muscle pain that was causing me to be unable to walk far and ridiculous fatigue issues muscle twitching and nausea for years, rheumatologist and GP’s were totally blasé and usually couldn’t get me out of their offices quickly enough. Finally a muscle biopsy showed I had Necrotising Myositis, rheumatologist then went into panic mode to try and get me treatment(probably realising she was instrumental in the disease progressing when it could have been stopped earlier on). Lost all faith in so called traditional medicine and so called experts, treated myself with cannabis oil. A weaker minded person would probably be disabled with this condition now, I knew the pain that my body was going through and am disgusted at the gaslighting that happened to me.
I’m sorry you were dismissed and treated this way. Unfortunately it’s far too common.
When I was 35 yrs old I was standing in my kitchen making my kids breakfast when out of no where I was struggling to breath & literally gasping for air. Suddenly my heart began to race, my chest was tight & heavy and I was lightheaded like I was about to pass out. It eventually passed but then I started to feel it again. I went to urgent care where I had an abnormal EKG so they called an ambulance to take me to the ER. The EMT on the ambulance insisted it was just anxiety or a panic attack. I couldn’t believe he said that to me. I have never had anxiety & I was just hanging out with my kids making breakfast without a care in the world. When I got to the ER they took it very seriously & rushed me in for tons of tests. I was diagnosed with dilated Cardiomyopathy, a left bundle branch block & congestive heart failure with an EF (Heart function) of 10-15%. My heart was severely enlarged & barely pumping. It was later found that I had been suffering from Lyme Disease for 1 year which had caused tons of symptoms that I had ignored & lead to all of my heart problems. I had to have a CRT-D device implanted & my heart was so enlarged that the surgeon had a very difficult time putting it in. The entire time I couldn’t forget the EMT who did nothing & made me feel like I was exaggerating or lying. If it was up to him to treat me I probably wouldn’t be here to tell my story. Thank God the doctors took me seriously!
Jo, this is an incredible post. Unfortunately , I couldn’t read it all without risking a PTSD episode because it’s such a pervasive part of my history. Thank you for shedding light on just how pervasive and insidious this problem is. It’s especially difficult when one has already experienced this early in life. Not only have I nearly died and been denied treatment because of medical gaslighting, the toxic shame and distorted thinking I experienced as a consequence took me years of hard work to overcome and then overcome again once I was triggered by a long string of doctors who would rather make me feel and look crazy than take the time to try to help. And somehow I still don’t have the couage to walk into an emergency room, which continues to pose a risk to my life. We owe it to ourselves and those who come after to tell our stories and lobby for change in whatever ways we may. This had to be difficult to write. Thanks for standing up for us all. Xx
I’m sorry you have been so badly mistreated, and have suffered such abuse at the hands of doctors. Sending hugs
Michelle – I’m only just realising the level of trauma I’ve experienced. I’m terrified to even speak to a counselor for fear they will also gaslight me. You said you overcame the shame and distorted thinking, which I suffer from. How did you do it?Do you have any tips? Do I need to just bite the bullet and see a counselor? Thanks if you (or any others!) can help.
And thank you Jo for writing the article ❤️
Thank you so much for writing this article Jo and for highlighting the dangers of medical gaslighting, a covert form of narcissistic abuse. I’ve had my thyroid symptoms minimised and misdiagnosed as a ‘psychiatric disorder’ because my blood tests came back as ‘within range’ (within range is okay with GP’s rather than help our thyroid to function at optimal). Things like constantly low basal temperature, hair loss, weight gain, chronic fatigue, bone pain, etc have all been dismissed because of the archaic blood tests on the NHS. It’s left me disabled, foggy thinking, memory loss, and with bone pain. Like many women, gaslighting, neglect and invalidation causes PTSD. That in itself is difficult to live with and work through. Seems to me that many GP’s in the NHS have forgotten their oath of ‘first do no harm’. Some are openly hostile and abusive and trash the patient’s character in their medical notes. They’re dishonest and deceitful, leaving patients hesitant to reach out again with another GP practice, for fear of their trauma being re-enacted by yet another gaslighting GP. Some patients are so disabled, they take their own lives. Some of us are still here, but for how long we can’t say. But in many cases, women and young girls with very real physical pain, are not only dismissed but pathologised, usually with the BPD / EUPD label. Just for speaking out. Just for asking for the very basic healthcare required of anyone in physical pain. I think for some to say that the harm done is unintentional, only invalidates patients experiences further. We’re the ones sitting opposite arrogant GP’s, we’re the ones who witness the look they give us (almost as if they hate us for daring to question their authority) and we’re the ones reading degrading comments about us in our medical notes. Gaslighting is never unintentional. It’s insidious and it’s used to cause intentional psychological harm. It’s narcissistic abuse.
I’ve just come across this, looking for what I can do when my GP is gaslighting me. He told me yesterday “I don’t know why all this focus is on your nose, your nose is fine!” because an MRI showed no signs of blockages. Okay it’s not blocked but it still hurts. I’m nauseous all day and it’s ruined my life for the past 8 months. I’m crying and in pain every day. I can’t carry on like this. It’s causing me pain, it isn’t fine. It’s your job to find out why it hurts, not tell me that it’s fine when I’m crying over the pain. I just don’t know what to do. Sad we are treated like this at our moment of need. I don’t want to be in your stupid doctors surgery I just want to not have nose headaches anymore!
Thank you Jo for sharing your story and speaking out. I am so sorry that not just you but many people have lost years of their life, dignity and respect. I was a shy, quiet naive girl when a doctor thought I had an eating disorder. My pain and bloating was dismissed, it took nearly 3 decades to establish that I had coeliac disease. I became extremely ill, have complications and was deficient in everything. Fortunately, I had money to go private. It’s been quite some journey, I am very lucky to still be here.
Thank you for sharing this. This happens far too often to patients. I personally was told for years that my palpitations and chest pain were being caused by “stress”. When I was unable to pin point any “stressors” I was told that “sometimes you don’t know you are stressed. You should take some anti anxiety medication”. Fast forward to 2 years later where I was finally referred to a specialist (my doctor had refused previously) and we found out I have heart inflammation and pericardial effusion.
What I wish I knew was how to deal with the gaslighting medical professional. Sometimes I feel as though I can’t stand up for myself. There should be mandatory courses in med school to bring attention to medical gaslighting and the negative effects it has on patients and delays in treatment. We do not want to be sick – no one wants to fake this.