Epilepsy Talk

Gaslighting — What to Do When It Happens To You | October 15, 2020

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. Of 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://www.ajourneythroughthefog.co.uk/2019/11/have-you-been-a-victim-of-medical-gaslighting/

https://www.nerdzillakelly.com/blog-main/2019/6/10/medical-gaslighting-when-your-doctor-tries-to-make-you-feel-crazy

https://opmed.doximity.com/articles/misdiagnoses-happen-medical-gaslighting-should-not?_csrf_attempted=yes

https://vocal.media/longevity/medical-gaslightinghttps://alathiahayes.com/2020/02/21/6-ways-to-avoid-medical-gaslighting/


29 Comments »

  1. Ooh, this is a real button-pusher! It will take me a while to respond calmly and in an organized way. Breakfast first, I think.

    Meanwhile, rather than writing everything down, consider taping the appointment. Or, if there are two of you, one could write and one could tape.

    Thanks for opening the door to this particularly unpleasant closet.

    Liked by 1 person

    Comment by HoDo — October 15, 2020 @ 8:16 AM

    • Actually, YOU opened the door for me, with that article you sent me.

      Taping a visit is a great idea. Much more efficient than taking the time to write everything down and missing some things. (And we all know how fast doctors talk!)

      Thanks HoDo, as always.

      Like

      Comment by Phylis Feiner Johnson — October 15, 2020 @ 8:25 AM

  2. I have my own stories, but my mom had it worse than I do. We were in a major car accident and she was t-boned on her side (drivers). She had nerve damage in her arm and a broken leg. They didn’t even x-ray her leg in the ER when she said it hurt. The doctor told her her arm didn’t hurt as much as she thought it did. The kicker though was that nine days later, her leg still hurt so bad that she went back to ER and said she thought it was broken. They said, your leg can’t be broken, you couldn’t walk on it if it was. She cried and finally convinced them to do an X-rat and lo and behold…. It was broken. 😲

    Liked by 1 person

    Comment by Hetty Eliot — October 15, 2020 @ 8:53 AM

  3. Guilty until proven innocent… 😦

    Like

    Comment by Phylis Feiner Johnson — October 15, 2020 @ 8:55 AM

  4. This is scary business!! I threw my T6 rib outta my spine pitching in College….. well that was 20 years ago and I still deal with pain. One night I was in so much pain I couldnt breathe and had to call 911 on myself!!! When I got to the Emergency room I told them about my history but said that I really should have an Xray! They said I was okay, gave me some muscle relaxers and sent me home! 2 days later I was still in so much pain I could barely BREATHE!!! So I called my GCP and he asked me to come in right away for an Xray!! Turns out I had a LUNG Infection!!!! Just because we’re trained to believe what the Doc says…… this isnt always the truth, and a good Dr will encourage you to do your own research and get a second opinion if possible!! Stay strong folks!!

    Liked by 2 people

    Comment by Aaron Holmes — October 15, 2020 @ 12:01 PM

    • A second opinion should be our mantra, Aaron. Thanks for reminding us of this.

      When the Doctor thinks he’s God, it’s time to turn in the opposite direction and run (figuratively).

      You, obviously ARE strong. STAY that way and be an example to others.

      Like

      Comment by Phylis Feiner Johnson — October 15, 2020 @ 12:33 PM

  5. The neurologist who eventually made the first diagnosis of temporal lobe epilepsy grilled me about my use of street drugs. I was having major hallucinations. He would not let up, nor was he neutral about users. In vain I said I’d never taken street drugs. The imaging finally backed me up. Then he said, “You’re like a used car that’s a lemon. You’ll never work right.” So to him, I wasn’t human.

    Fast forward. Different city, different set of symptoms. My internist ordered an EEG, which shows nothing. (It was years until I learned only an fMRI would show the scarring in action.) She decided I was neurotic, hysterical and depressed. The drug she gave me was the one they say never to give a person with temporal lobe seizures. My symptoms got worse. She said take more. No.

    Yet another city. Different hallucinations and other symptoms I can only call Stuff. New diagnosis: temporolimbic dysrythmia. Very cool. New psychotherapist. I feel she needs to know some of this, though it’s not on that account I’m consulting her. She is horrified and decides I have schizophrenia.
    I say, “I’ve been seeing psychiatrists for thirty years. Surely one of them would have noticed.”
    She says, “I’ll ask my friend, who is a psychiatric nurse.”
    I say, “Your friend has never met me.”
    She says, “!” and then a week later, “My friend says you probably don’t have schizophrenia.”
    Well, duh!

    And those are the highlights. Now, when a new neurologist orders an EEG, I say, “It won’t show anything. Will you still believe me when I tell you what’s happening?” And we’re on the same page.

    Exhale.

    Liked by 1 person

    Comment by HoDo — October 15, 2020 @ 12:01 PM

  6. I think, I like the “my friend” diagnosis the best.

    Not that all the others weren’t scam artists.

    Being called hysterical is typical gaslighting — as you know.

    So are a bunch of other emotional pejoratives. But you got it in spades, with no relief in sight.

    Amazing that you still have enough faith to go to a neurologist. Not that you have any choice.

    I can see why you’d feel like packing it in, HoDo. You’ve been through the worst of the worst.

    Like

    Comment by Phylis Feiner Johnson — October 15, 2020 @ 12:41 PM

    • No, not the worst of the worst, just moderately bad. The second neurologist said, of the first one, “He’s sort of a loose cannon.”

      Neurologists are people, too. They can’t know everything. Someone had to graduate last in their class. (Now and then I ask where in their class a doctor placed.) I’ve also learned not to make decisions quickly, no matter how pressed. Need time to look things up, because I’m not good at framing questions on the spot.

      Liked by 1 person

      Comment by HoDo — October 15, 2020 @ 1:44 PM

      • And how many of us have suffered through a neurologist who graduated at the bottom of his/her class?

        But as you say: Someone has to be first, therefore someone has to be last.

        Like

        Comment by Phylis Feiner Johnson — October 15, 2020 @ 1:51 PM

    • A bit of unsolicited advice. If you have occasion to visit a psychotherapist, ask early on how many clients she or he has seen who have your diagnosis. One or two is not enough. The last thing you need is a therapist who freaks out at the words, “epilepsy,” or “seizure.” Then you might feel obliged to look after them until they calm down, an unpleasant role reversal.

      It’s also hard to say,”I’m leaving, now. Thank you for your time.” Gaslighting could follow you to the door. (“We need to talk about why you don’t like women.”)

      Keep in mind that you deserve good care. Shop for it. Learn to recognize its opposite.

      Liked by 1 person

      Comment by HoDo — October 15, 2020 @ 2:01 PM

      • My therapist actually taught ME a lot about the link between epilepsy and depression.

        But I know, I’m very lucky to hit gold with just three tries.

        I interviewed three therapists, asked them theoretical questions, then decided who I wanted to go with.

        The first one said I was trying to parent MY parents (who actually were the further things from parents to me).

        The second told me I needed positive affirmation. (If I need positive affirmation, I’ll just go to my friends, thank you — and skip your steep bill!)

        And the third one won the door prize. Yay Dr. Keller! A true prince of a man who’s been through a lot with me.

        Of course, that’s a therapist’s job isn’t it?

        Like

        Comment by Phylis Feiner Johnson — October 15, 2020 @ 2:54 PM

  7. Wow HoDo!!! That has gotta be not just scary, but incredibly frustrating as well!! Ive done some very strange things during seizures and had one psychiatrist just casually say, “sounds a bit like Dis-associative Identity Disorder (what used to be called Multiple Personality Disorder)”…….. just SUPER casually! Of course he wasn’t the particular Dr I was seeing, he was just the Filter I had to see first, before seeing the Dr I was scheduled with! Thankfully I never had to see him before, and the actual Dr was like, “noooooo, I highly doubt that is the case!”…… phew!! *wipes brow*…… thanks for giving us all a voice Phylis!! Really appreciate you!

    Liked by 1 person

    Comment by Aaron Holmes — October 15, 2020 @ 12:42 PM

    • Ugh….. *edit….. that was meant to say, “see him again!”…. hehe

      Liked by 1 person

      Comment by Aaron Holmes — October 15, 2020 @ 12:44 PM

  8. Why are there idiots as gatekeepers to the “real deal”.

    Are they there to admit or dismiss us from the holy gates of heaven?

    Like

    Comment by Phylis Feiner Johnson — October 15, 2020 @ 12:48 PM

    • That might just be it Phylis!! hahahaha

      Liked by 1 person

      Comment by Aaron Holmes — October 15, 2020 @ 12:52 PM

  9. Thank you so much for writing this post and sharing this information. It is vitally important to find a doctor who will listen. When my child started taking Keppra at the age of 11 years-old, his mood immediately darkened. He was cranky and obstinate and would not talk about his feelings. The doctor really listened when I describe these mood changes, but the only metric she had in response was, “Is he hurting himself or is he lashing out physically hurting other people?” The answer to that specific question was, “No.” So he stayed on Keppra, acting extremely unhappy for years while taking it, and continuing to have break-through seizures. By the time he was 14 years-old and weighed 90 lbs., he was taking 1,500 mg of Keppra twice a day, and was moody and miserable. FINALLY the doctor switched his AED and he’s been seizure-free for over four years. Is he the happy-go-lucky kid he was before he ever took Keppra? No. But he’s a lot better off. How could the only question regarding his mood while on Keppra be the loaded question of, “Is he suicidal or homicidal?” No, he wasn’t, but he was miserable. I wish I would have advocated for a medication change sooner. Thank you for your blog. I am grateful to you for sharing your experiences and your knowledge.

    Liked by 1 person

    Comment by jennifer_d_diamond — October 15, 2020 @ 8:08 PM

  10. One learns to become a better advocate for their own health the longer they have been gaslite. This is coming from many, many years of experience on my part. Yes, Dr.s and therapists and other professionals are only “human.” But, who the hell else do we rely on when we can”t deal with our pain? Huh????

    Liked by 1 person

    Comment by skolly9 — October 15, 2020 @ 9:22 PM

    • There’s rely as in totally believing everything the doctor says, and there’s rely with a grain of salt, knowing they can’t know everything all the time.

      To my mind, the best reliance between patient and doctor is mutual trust, so that they work as a team, informing each other.

      This means, in part, that we as patients or care-givers have hard work to do in learning and in advocacy.

      Liked by 1 person

      Comment by HoDo — October 16, 2020 @ 8:04 AM

  11. Research, research, research!

    Like

    Comment by Phylis Feiner Johnson — October 16, 2020 @ 9:19 AM

  12. From a Huffington Post personal story on being gaslighted, the additional suggestion, “Trust your instincts.” The more you learn, the sharper your instincts will be, I find.

    Liked by 1 person

    Comment by HoDo — October 16, 2020 @ 12:04 PM

  13. Another example I’d nearly forgotten: a doctor furious at me because she took sudden weight loss to be anorexia. Turns out that the medication she was giving me for depression “was known” to cause weight loss, and I quote another doctor.

    Is it possible that some doctors don’t like vulnerable patients, and bully them because of it?

    Would I ever have the nerve to ask, “Doctor, are you gaslighting me?”

    Stay tuned.

    Liked by 1 person

    Comment by HoDo — October 17, 2020 @ 11:09 AM

    • Well, they’re not too keen on assertive patients who challenge their godly advice, either.

      Like

      Comment by Phylis Feiner Johnson — October 17, 2020 @ 11:17 AM

      • I’ve noticed that doctor-patient collaboration is rarely a peer relationship. This is true even when the patient is a doctor. My psychiatrist, for instance, experienced gaslighting by his son’s doctor.

        Liked by 1 person

        Comment by HoDo — October 17, 2020 @ 11:45 AM

  14. I became a social worker as a result of childhood trauma related to medical gaslighting. Of course, I did not know the term as a kid, but sure felt the terrible side-effects. I’ve always called out doctors, therapists, etc, re: gaslighting. Their responses have generally been denial, minimizing, belittling, stigma, etc. If possible I have tried to seek out another doctor. Not always possible, is it? I could write novels on my, my family , friends and former clients experiences. Maybe we should all write our stories, huh?

    Liked by 1 person

    Comment by skolly9 — October 17, 2020 @ 9:06 PM

    • We could wallpaper a whole hospital with them! Have a choice, Skolly?

      Like

      Comment by Phylis Feiner Johnson — October 17, 2020 @ 9:49 PM

    • Write the novel, Skolly! You have an engaging writing voice, thoughtfulness and intelligence. Go for it!

      Like

      Comment by HoDo — October 18, 2020 @ 7:58 AM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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