Epilepsy Talk
Gaslighting — What to Do When It Happens To You | July 25, 2021
Is your doctor making you feel crazy? Like it’s all in your head? Could you be a hypochondriac?
You must be imagining your symptoms. Or maybe you’re just in a panic.
“Go home and take two Advil. Or maybe two Xanax. You’ll feel fine when this blows over. I assure you.”
Maybe you should have gone to Google first.
(Google defines gaslighting as “a form of mental abuse in which information is twisted or spun, selectively omitted to favor the abuser, or false information is presented with the intent of making victims doubt their own memory, perception, and sanity.”)
Well, you’re not hysterical. Or a hypochondriac. idiot. You’re not “overreacting”. And you’re certainly not crazy.
But, chances are, your doctor is gaslighting you.
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.
We are often accused of being hypochondriacs or unreliable witnesses of our own experiences that results in subsequent doctors dismissing our symptoms.
It causes, 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.
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?
Minimizing 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?”Sometimes we believe the doctors who gaslight us.
Being ignored by your healthcare professional is one of the most common complaints heard by patient advocates, healthcare reporters, and now social media.
Over 77 thousand patients actually tweeted about delayed diagnosis stories in one week!
When we visit our healthcare professional at our most vulnerable, learning that our symptoms are being discounted hurts.
The impact can cause both emotional and practical damage. Too often dismissed patients avoid health checks in the future and go without proper medical care and screenings.
There is a subtle difference between a patient who experiences a delayed diagnosis and one whose symptoms are dismissed.
Delay can happen for many reasons.
For many women in America, this response is all too familiar.
According to the Atlantic, researchers have found that women consistently receive less pain medication than men, as do ethnic patients.
And they are less likely to be admitted to hospitals and receive necessary tests than men complaining of similar symptoms.
In some cases, this can lead to months of pain and lowered quality of life.
In the worst-case scenarios, this can lead to death or disability due to misdiagnosis and lack of treatment.
“If 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. — Kelly Mendenhall
6 Ways to Help Avoid Medical Gaslighting
1. Learn to advocate for yourself.
The first thing you have to do if you want anyone to take your pain seriously is to learn how to take your pain seriously for yourself. Don’t downplay your pain. If it affects your life, learn to speak up. Explaining your experience with pain is not attention seeking, so get rid of that thought. It my take time, but you will eventually learn how you are comfortable explaining your pain and talking about it will become easier.
2. Bring a friend with you.
A simple way to be taken seriously is to bring someone with you who can back you up. It’s easy to feel almost ganged up on at an appointment by yourself, especially if a doctor is committed to not hearing you. Bringing someone along that can support you and help you remember details about the appointment or about your health is invaluable.
3. Write down everything.
Doctor’s appointments are often a whirl of information. Things can get lost very easily in conversation. A simple but incredibly helpful way to make sure you were able to say what you need to say is to write down what you want to say before hand and then take notes during the appointment as well. This is especially helpful if you’re transferring medical data between doctors or seeing a doctor for the first time.
4. Have clear goals.
Having a clear goal in mind before visiting a doctor can save you a lot of frustration. The simpler the goal, the better. Sometimes it helps to have just one symptom, one medication, or one problem you want to specifically address in an appointment. When you come in focused on a certain thing, doctors will have a harder time brushing it aside.
5. Ask questions.
If you have questions, ask them. Don’t hesitate for a second. Knowledge is literally power, especially in the medical world. Ask questions about diagnostic processes, medication, medical protocol, anything you think will help you.
6. Ask for a second opinion.
A lot of people seem to think second opinions are somehow taboo or rude in the medical world. I think that is ridiculous. There is nothing taboo about seeking more opinions about your health. It’s your health. A good doctor will not be offended if you see someone else for a second opinion. In fact, a great doctor may even suggest it. Don’t be afraid to seek further medical help if you have doubts or just want more clarity about your diagnosis and treatment.
“Missteps and misunderstandings, even by well-seasoned medical professionals, are human, but medical gaslighting is not.
Medical professionals must take a step back and recognize that the interpretation of test results is only as good as the practitioner glancing at the numbers.
Moreover, normal test results in patients with chronic pain, unexplained sensitivities to the world, or fatigue should provoke more investigation, rather than a weak handoff to a mental health provider.
One potential remedy to avoid these misdiagnoses and medical misdemeanors may be to rebuild the patient-practitioner partnership: the medical home.
We should be empowering the patient to take charge of their health care, and we should be a partner in that care.” — Dr. Anne Maitland
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Resources:
https://www.healthline.com/health/mental-health/doctors-gaslighting-patients#3
https://vocal.media/longevity/medical-gaslightinghttps://alathiahayes.com/2020/02/21/6-ways-to-avoid-medical-gaslighting/
https://www.medicalnewstoday.com/articles/gaslighting
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Epilepsy Talk 
Here are two epilepsy books written by women that were manipulated by their doctors. Brain Storm by Kate Recore and The Spiral Staircase by Karen Armstrong.
It happens. Be aware. Thanks Phylis.
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Comment by Flower Roberts — July 25, 2021 @ 10:38 AM
Flower, thanks for the tips on the two books. (Of course they were written by women. I wonder what percentage of women versus men get gaslighted?)
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Comment by Phylis Feiner Johnson — July 25, 2021 @ 10:41 AM
I’ve stumped a few surgeons with questions by doing my own research on studies. Have your list of questions ready during your appointment or video conference. Do your research, and don’t just google, look at studies with outcomes in your age as well as diagnosis. Don’t be afraid to ask the doctor about how many times they have performed this procedure with your medical history. They are required to give you all of the possibilities with any procedure or medication by law. Make a pros and cons list.
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Comment by Kerri Keating — July 25, 2021 @ 6:11 PM
Good for you! Forewarned is forearmed!!!
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Comment by Phylis Feiner Johnson — July 25, 2021 @ 7:40 PM
Yeeeeeeeeeeeeeeeeeeeeeeess. 💯 This is the story of my life. It really does begin to mess with your sanity and self-confidence when everything you say is happening to you gets dismissed. These doctors really make you feel like you’re just nuts.
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Comment by Hetty Eliot — July 25, 2021 @ 10:09 PM
That’s what has happened to me with epilepsy and other issues, I’ve often been left to look after myself, one time I heard about catamenial seizures, tied in with menstruation, which used to all happen together, asked my neuro and he yelled back, female fantasies, don’t waste my time
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Comment by Gail Barry — July 26, 2021 @ 2:26 AM
Without sounding too sexist, most male neurologists are clueless when it comes to Catamenial Epilepsy. (If it doesn’t pertain to them, who cares?)
Just for the record, here’s an article that may fill in the missing pieces:
Catamenial Epilepsy – Do You Have It? https://epilepsytalk.com/2021/05/02/catamenial-epilepsy-do-you-have-it/
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Comment by Phylis Feiner Johnson — July 26, 2021 @ 9:24 AM
Wow! I skimmed the article. Even so, it brought tears to my eyes. This can happen I believe, when you have to know what kind of seizures you have. Many of us are not sure how our seizures manifest themselves. We need to get the information from the doctor so that we can live our lives. School, jobs, other activities can be so much better once we know what we do during a seizure. However, many years ago, I was supposed to have a comprehensive evaluation of my seizures in a hospital. I left the job in another state that I had dreamed about all my life. I had a grand mal seizure, supported by EEG, that first day in the hospital. The next day, (what happened to the 12+ days I was supposed to be in the hospital),the doctor discharged me from the hospital, saying that he was not going to prescribe seizure meds for me. And the bump on my head is from what exactly? I left the hospital. What else could I do? However, the job I had dreamed about for 28 years and finally got, was not going to be. I didn’t have any information on my seizures to give them. And the doctor was an expert on epilepsy. Nope. My family doctor said that it was medical negligence, if not malpractice. However, he wasn’t able to find a doctor that would help me to find out what happened to me when I had a seizure. A few were honest enough to tell him that “I have to work with him sometimes. And I can’t afford to get on his bad side”
Medicine is supposed to be tied to the type of seizure you have. However, since I didn’t know seizure, they didn’t know what meds to prescribe. And I couldn’t go back home with no diagnosis and teach children. Adults are traumatized enough when they witness a seizure. It would be immoral of me to knowingly subject them to the very real possibility of seizures. Although, I do believe in karma. The “expert” doctor is said to have died of a brain tumor. I’m willing to bet, however, that if he had any seizures, he would have been told exactly what they looked like, and they would have told him that, while he was waking up from the seizure. Ain’t life interesting? Make It A Good Day Today!
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Comment by spunky1inmpls — July 28, 2021 @ 12:48 AM
Spunky, did you find a new, competent neuro? One who could could diagnose you and give you the proper meds?
If not, below is a compilation by website forum members who have had positive personal experiences with docs over the years.
This list is based on recommendations and, of course, is purely subjective. But it might be helpful for anyone looking for a good Neurologist…Epileptologist…Neurosurgeon…or Pediatric Doctor.
NOTE: The National Association of Epilepsy Centers (NAEC) provides a directory of specialized epilepsy centers in the U.S. along with other useful information about epilepsy. http://www.naec-epilepsy.org/
Another good resource for finding an epileptologist or neurologist is the American Epilepsy Society (AES). They also have a “finder” where you put in your zip code or state. http://Www.aesnet.org.
2021 Patient Recommendations for TOP Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors https://epilepsytalk.com/2021/01/04/2021-patient-recommendations-for-top-neurologistsepileptologistsneurosurgeonsand-pediatric-doctors/
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Comment by Phylis Feiner Johnson — July 28, 2021 @ 9:01 AM
I believe I was just gaslighted by a Seizure “expert”. I have had focal unawareness issues all of my life starting in childhood and was never diagnosed or taken to a neurologist because my parents thought I would ‘out grow’ it. Well, I am 56 now and haven’t out grown it and it has effected everything in my life. I lost my career as a police officer and had horrible relationships due to this and now my so called expert advised me not to drive. I am not diagnosed with anything so I am not driving, plus she wantes me to start taking an anti epileptic drug which I refused..also, she wanted me to see a Neuropsychologist to discuss past traumas in my life! WTF does this have to do with my episodes??? ALSO, the “Maybe if you lost weight…” issues….I am SICK of this same approach everytime I go see someone about my symptoms. I have scattered lesions, focal seizures, MS symptoms that I have been trying to get an answer for almost 20 years! I quit seeing every doctor, including my GP and now, I am in immense agony and my legs are very weak, burning and I can’t go out anymore and enjoy the things I love. Because of doctors’ laziness, I am a prisoner to my symptoms and left with nothing. I am so disgusted by this pill popping, psychological effed up medical society.
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Comment by Saoirse — May 31, 2022 @ 11:35 AM
Well, the only thing encouraging that I can offer is the suggestion of a new neurologist, as noted above.
My parents were in denial about my seizures too, which almost cost me my life. They were the “gaslighters”!
It was ages before I found the right neurologist AND therapist. Thanks to them, I’ve been seizure-free for decades.
I wish the same for you.
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Comment by Phylis Feiner Johnson — May 31, 2022 @ 12:40 PM