I know, some of you are scratching your heads. Medical gaslighting may be a totally new term to you. If that’s you, consider it a blessing that you haven’t been acquainted with the topic for yourself. I urge you to read on anyway.
For others of you, those two words stir up memories and traumas within you that you’d rather forget. Trust me, I get it. I really do.
I want to forget too.
But I’m choosing to speak up instead. I may not be able to change what happened to me, but I might be able to make a difference in someone else’s experience.
What is medical gaslighting?
To gaslight is to “manipulate (someone) by psychological means into questioning their own sanity.” —Oxford Dictionary
“Gaslighting is a form of psychological manipulation in which a person or a group covertly sows seeds of doubt in a targeted individual, making them question their own memory, perception, or judgment, often evoking in them cognitive dissonance and other changes such as low self-esteem.” —Wikipedia
Medical gaslighting is what happens when doctors refuse to take their patients seriously, either by ignoring the patient’s symptoms, misleading the patient about a diagnosis, or accusing the patient of lying or fabricating information about symptoms.
This is a real and dangerous problem in the medical world that I have been personally affected by.
Medical gaslighting is increasingly prevalent in the chronic pain community. I have read so many blogs, books, articles and social media posts that chronicle personal accounts of medical gaslighting.
So today, I want to share a part of my story with you in greater detail. I’m not sharing this for pity and I’m not sharing this out of bitterness for my doctors. In fact, I’m choosing not to share my doctors’ names in this article at all. I simply want to raise awareness about the issues regarding medical gaslighting. I’m speaking up because I know so many people are hurt by the medical system, much worse than I was. I want others who have experienced medical gaslighting to know they are not alone.
My Experience With Medical Gaslighting
The story I want to share with you starts back in 2017 when I was 16. I had just been misdiagnosed with lupus. I was referred to a rheumatologist by my pediatrician to discuss my recent lupus diagnosis and explore other possible diagnoses. I was dealing with crushing fatigue and body aches at the time.
When I arrived at the specialist’s (at a renowned children’s hospital, mind you), I was taken care of mostly by a young nursing student. We discussed my symptoms, my medical history, my current diagnosis, and my lab work. She reported all of this to the rheumatologist. Eventually, the rheumatologist came back into the room and did a brief exam of his own.
Within five to 10 minutes, he told me four important things.
1. “You don’t have lupus.”
This was the only good news that came from this appointment.
2. “You definitely have amplified musculoskeletal pain syndrome.”
This was a conclusion he came to within minutes of seeing my medical records and before he actually saw me in person. He slapped this diagnosis on me without hesitation, much less a proper exam or any medical testing.
3. “You have a 95 percent chance of full recovery if you follow our treatment plan.”
Yes, that was the actual statistic quoted to me. This was a completely unfair thing to tell me. I followed the suggested treatments to the letter and my condition only grew worse (which they later blamed me for). I’m appalled that I was basically promised a full recovery. I didn’t know any better than to believe them. I was 16.
4. “You’re too sensitive.”
This was the most blatant example of gaslighting from that day. I was paying this rheumatologist hundreds of dollars for a 10-minute consult so he could tell me that I was too sensitive to my pain… life-altering pain that had brought my vibrant, active teenage years to a screeching halt. I honestly felt like I had been punched in the stomach and I almost cried right there in the exam room. After the pain I had already been through and the stress of being misdiagnosed with lupus, being invalidated like that by a doctor was incredibly dehumanizing and embarrassing. This doctor’s words made me question the validity of my pain. It made me feel “insane” while simultaneously giving him a pass to not do his job well.
Over two years later, I was reviewing my medical records with another doctor in 2019 because I had not recovered from my illness and my health had hit an all-time low. I was still dealing with 24/7, life-altering physical pain which was resulting in intense mental health issues. It was at this time that I was informed of what my rheumatologist had written in my chart back in 2017. He had written that I was severely depressed and that was contributing to my pain and fatigue. He came to this conclusion and wrote it in my chart after a five-to-10-minute appointment without any mental health screening and without discussing it with me or my mom (who was with me at the time because I was still a minor).
My new doctor was nearly as frustrated as I was to find such an unfounded conclusion that I was completely unaware of in my official medical records. When I saw my rheumatologist back in 2017, I was kind of depressed. Who wouldn’t be? I was depressed because I was in pain and fatigued and I didn’t know why. I was not in pain because I was depressed. My more recent doctors have been fantastic at making this critical distinction.
No matter how you look at this story, these two things remain true.
My pain was invalidated by my rheumatologist.
Unfounded medical information about my mental health was officially recorded and withheld from me and my legal guardian.
This, my friends, is medical gaslighting.
Unfortunately, this wasn’t the only time I experienced it. This particular case cost me time and money and it did some really awful things to my mental health as a 16-year-old. I was new to the chronic illness life and had no clue how to advocate for myself. I also had no idea what medical gaslighting even was at the time.
That’s why it’s important for me to share this story with you. I want you to know that not every doctor is going to listen to you. Not every doctor is going to believe you.
Heck, they might even call you “too sensitive” for experiencing life-altering pain and being brave enough to speak up about it.
It doesn’t make you “crazy.” It doesn’t make you a hypochondriac. It doesn’t make you a liar.
If you think you are a victim of medical gaslighting, I want you to know there is hope.