Health-care gaslighting: Not strictly thyroid... - Thyroid UK

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Health-care gaslighting

MiniMum97 profile image
MiniMum97

Not strictly thyroid related but thought this might be of interest to members as it resonated with me. Great term for it and I hope more is published about this so patients, men and women, stop being fobbed off and ignored by the medical profession...

theatlantic.com/family/arch...

37 Replies

Thank you for posting this! What a great article.

I believe this happens more than people would like to admit in all areas of medicine. What's unfortunate is that Doctor's are seen as 'all knowing' by most people, and it makes one feel they must be crazy when a Dr. dismisses something very real as a psychiatric problem or as just being a hypochondriac or a 'baby'. Not to mention the complications that occur from it and the needless suffering.

My mom has heart issues, but all the cardiologists dismissed her. She was in the hospital for 3 days and they said she was fine after running tests.

When she continued to have symptoms she heard "there's nothing wrong with you" - "I don't care what you do, but I'm done seeing you". "Or come back in a year or not".

Later a Dr, a vascular surgeon, one who deals with the rest of the body's veins, finally listened even though the tests he ran showed nothing was wrong. He went in 'blind' and did a cath on her Ileac artery, because he couldn't feel a pulse in her ankles and knew that wasn't right. He was willing to go against the 'normal' tests and check it out. It was 90% blocked. Which explains why she could hardly pick up her legs, was winded and couldn't breath sometimes, had chest pains with high BP and couldn't do stairs. She now has two "kissing stents" there.

She's much better, but also has small artery disease, which apparently no one quite understands how to treat effectively (at least where we live). So she is still having some issues. Taking Nitrogen, along with other drugs helps, but not completely. They are doing research on small artery disease now, but trials will not end until something like 2020-22. Seems to be something women face, not men. There is a lot of info on how men's hearts work and the problems they face, but not so for women. Some Drs are starting to see women are different and to listen, but not everyone.

That really showed in the way my Mom was treated and still is by cardiologists. I went with her to some of the numerous Cardiologists appointments and was appalled by Doctors telling her there was nothing wrong with her and she was just old and to get over it. She is older, but really? All I could do was tell her I believed her, something was wrong and we needed to keep looking for the right doctor.

She's hoping she can now find someone who understands small artery disease. What makes it harder, is she also has Hashimoto's with Pituitary issues - which can cause heart palpitations. She has to be in the 'goldilocks' zone with her thyroid meds, otherwise taking too much causes palpitations and chest pain, too low causes palpitations and chest pain. All the heart doctors want her to lower her dose because her TSH is always low and they ythink she's over-medicated. She's gotten good at adjusting her dose based on her symptoms after seeing a non-traditional doctor for her thyroid (who has since retired). Cardiologists and other GPs blame that instead and say her thyroid is the problem. None of the doctors seem to know how these two areas interact with each other - and they blame the other side for whatever is going on - go to the cardiologist or it's a problem with how much thyroid you're taking... We've just been concentrating on her doing less and having more fun. She's not giving up on finding someone who understands small artery disease and she's done a ton of research herself. All I can do is support her, encourage her and love on her. I think she's been very brave and courageous through it all.

mrsm49 profile image
mrsm49 in reply to Hmc449

What a fantastic supportive daughter you are xxx

Hmc449 profile image
Hmc449 in reply to mrsm49

Thanks mrsm49 - she means the world to me. Xx

Wonderful article. No doubt there's courage in numbers & we'd better start screaming to be heard.

You might find the following links of interest on the subject of gaslighting and medical sexism. The two are often related.

misstreated.org/misstreated...

lennyletter.com/story/when-...

bbc.com/future/story/201805...

bbc.com/future/story/201805...

theatlantic.com/health/arch...

theatlantic.com/notes/all/2...

One of the things I do now - and I can't actually remember when I first did this, but it was probably within the last five years - is I usually see a doctor with my husband as a witness who can vouch for me.

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Hidden in reply to humanbean

What you mean is, "here is a man, who cares about me, I'm not alone, here is a man for you. Take me more seriously. I am not just a woman. I got a Man here, you take note, Doc" How sad, that is (that you would have to do this as if you are a toddler but you got a parent there to speak up if necessary. Things got to change. It' a bit like racism. You are treated badly or ignored because of your race/colour. You are women, you don't deserve my time. It's very bad.

humanbean profile image
humanbean in reply to Hidden

I must admit that having to take my husband to medical appointments annoys the crap out of me! I consider myself to be a reasonably intelligent woman who shouldn't need a husband or any other man to vouch for me, but sadly the medical profession have defeated me on that score.

MiniMum97 profile image
MiniMum97 in reply to humanbean

Just had time to read through your links which have made me very angry (and the second from bottom left me in tears). I have left appts with doctors angry or upset more times than I can say, and often, like you, resort to taking my husband to appointments. It is absolutely disgusting that this sort of bias is causing women to be left without adequate treatment and in pain. Interestingly though, I have recently seen two doctors whose treatment has frankly been bordering on negligence (with proof) but I haven't complained as I am ill, and need doctors, and am fearful of being "blacklisted" as a complainer. It leaves you voiceless. I am glad this is getting press, I hope this continues and that this will lead to changes in culture. So depressing.

humanbean profile image
humanbean in reply to MiniMum97

Yes, I fear being blacklisted and refused all treatment as well. This is another reason for taking my husband along with me - I want a witness to everything.

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Hidden

There are review sites for doctors, but I have never resorted to "name and shame" as such before. I have been known to make a formal complaint if the case was "that bad". Also, the issue is doctors have the power, many of us do not want to "burn the bridge". I must admit though, as much as I try to "understand", they ought to know that patients nowadays are educated and often know far more about the condition and how they ought to diagnose the condition "properly" not their own way. I found myself "educating" a top Neurologist at RF (which is a top hospital) about the diagnostic protocol he (could) well have adopted and the dismissive interpretation that he made. Maybe, the relationship is now over. He also tried to convince me that the abnormalities shown are "just some mistake". I agree that male (if not all) tend to get frustrated if they are not getting what they want to see right there. It's a bit like at a down and out area checkout where they want you out as quick as they can to keep the till going as fast as possible. The above poster commented on someone, who sadly retired. I tend to think old school doctoring used to look at the patients and listened, not nowadays, doctors staring at a computer screen and the test results, to make a snap decision.

whisperit profile image
whisperit in reply to Hidden

You're right - it's all about the power relationship. In addition to my GPs, I've seen many consultants in the last 3 years, including rheumys, respirologists, endos, neuros, and cardiologists. Of these, perhaps half have been so poor at listening to my experience and insights that, had I a truly free choice, I would have walked out and gone to see a different doctor immediately. But in nearly all of these situations, I was all too aware that it was all too easy for them to decide that my case was of no interest. They had absolute power over whether I would remain in their specialty - not just on their personal caseload, but as a patient of that whole specialist service. It is their personal gift to decide whether I would remain a endocrinology (or whatever) patient at all. If not, I would be 'returned to the care of your GP' and, at best, face being placed on the end of the waiting list for re-referral.

One typical, and infuriating, consequence of this is - having carefully set out my symptoms and rationale for proposing a particular clinical interpretation - having to sit there whilst my words, experience and suggestions are ignored in favour of a lecture about the importance of 'anxiety management'. This is precisely 'gaslighting'.

Although I am a man, I would say that women are particularly liable to this kind of treatment as a consequence of the entrenched sexism of medicine and society as a whole x

This is a great way of putting it - if you had free choice you'd have walked out. I agree that I feel exectly this way in a high percentage of cases.

Espeegee profile image
Espeegee in reply to whisperit

Oh yes, I’ve experienced this! The senior partner GP with his decades of experience to whom I explained about my herpes. His response, no word of a lie, “well let’s start by calling it a cold sore shall we” patronizing B. He wouldn’t even agree it was that unless he could see it! My butt is often a purple patchwork of healing herpes outbreaks which I’ve had for 40 years! He also wouldn’t refer me for my hearing problem (deafness and 30 years of tinnitus) because when he looked in my ear he said it need syringing I pointed out that even after syringing I’d still be almost deaf and still have tinnitus, his response was a script for ear drops and didn’t even suggest I came back, I wear 2 hearing aids, presumably an affectation rather than any chance of my being deaf. I never bothered going back.

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Hidden in reply to whisperit

I also think that if your try to point out your symptoms to try and help the doctor they're first response is to try to prove you wrong. They do it all the time to nurses and ambulance crews who now do not communicate with doctors for this reason. Thye take offence as us being know alls and set out to prove us wrong or they decide that we are anxious about having such and such condition and need to be reasurred that we dont have it.

The next time I see a consultant I am going to tell them that my GP is concerned but that I dont think there is anything wrong and I am going to shake thier hand at the beginning and say pleased to meet you sir and see how it goes.

I once new a nurse who alwasy called the consulutant sir. They used to prepare a tea tray with the best china and doilys and posh bisuits before going into any meeting with the doctors. The nurse was a man would you believe.I questioned this grovelling and he said 'needs must, just doing my best for the patients'.

LindaC profile image
LindaC in reply to Hidden

Yup, shrewd and very likely the best way... I just can't do it! ;-)

An interesting article, thanks for posting.

I certainly remember visiting the doctor in my 30’s with tiredness and apathy, weight gain and being told it was because I was working and looking after a young family. Later, it was due to the menopause. Apparently.

I’ve been investigated for sexual pain. Nothing found. All in my head. Apparently.

I remember my husband being diagnosed with tonsillitis. He was told to rest in bed for a fortnight. Imagine that.

Human Bean, I’d love to take my husband to appointments. Unfortunately he would take the side of the doctor even more. It’s incomprehensible to him they could be wrong. Or perhaps, it’s that I am right.

humanbean profile image
humanbean in reply to Bluedragon

I used to get very frequent tonsillitis as a child. I got rushed back to school at the earliest opportunity, but I was allowed some time off to recover. (Getting my tonsils out helped enormously.) Nowadays, school children aren't supposed to take time off for tonsillitis at all. God knows how the kids cope with a body temperature of 103F - 104F which is what I used to get. So why an adult male is told to stay in bed for a fortnight baffles me!

I'm sorry your husband wouldn't be supportive in a doctor's appointment. My husband rarely says anything to the doctors. His presence is all that is required to keep doctor's polite. And if nothing else, that on its own makes it worth it for me.

DeeD123 profile image
DeeD123 in reply to humanbean

My partner is extremely supportive. He has been the one before now that will ask “well what could it be then as she doesn’t complain and hates being ill “ his memory is golden for what’s been said as well.

DeeD123 profile image
DeeD123 in reply to Bluedragon

That made me laugh. Two weeks in bed for tonsillitis. Male doc told me to gargle with aspirin and get on with it. I can see why your OH believes the doctor over you lol

This (short) article is jaw-dropping :

articles.chicagotribune.com...

I won't explain it - I'd spoil the surprise!

crabapple profile image
crabapple in reply to humanbean

................... [speechless]

Bluedragon profile image
Bluedragon in reply to humanbean

Speechless also......

I only just learned about the term gas lighting, but now you mention it, it does seem to apply to the treatment of a lot of people in the forum...

VERY INTERESTING AND WHETHER- sorrycaps on- everything is thyroid related because without thyroid we are dead so its all thyroid related. and all organs are interconnected. its synergy

This is a common term - 'gaslighting' in M H [which I worked in for toooo many years] - generally applied to PD/narcissists - thank you. I'll read this later :-)

Any/everyone must challenge these beggars... then there's the danger of giving them what they want. xox

Hidden profile image
Hidden in reply to LindaC

Typicla MH services encourage people to sit i a room talking about themselves with a therepist for years on end and then call the Narcissistic. Iam glad I am out of it too.

LindaC profile image
LindaC in reply to Hidden

Yes, all of these 'new[er] promotions' for people to declare and tell all' - I've seen what 'they' do to people - we [our agency] used to advocate for people against these, often worthless, *&^%&*'s. These days I suggest to people that they form a small, strong supportive network... 'the drugs [certainly] don't work' and they'll just patronise and label you.

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Hidden in reply to LindaC

It makes me want to puke the way they are labelling and therepising children these days and everybody starting petitions for more mental health beds. Do they want themselves or thier children to end up in one?

Self help groups great as long as not professionals running it.

Glad to hear I am not alone.

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Hidden

It seems we often read these in the USA/UK context, made me wonder if it's something to do with how their medical schools taught them? "ah, that's not in my medical textbook, as you know I am a Doctor, trust me on this...("CRANK!" in his thoughts), farewell..."

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Hidden

Thanks for the article . It all helps doesnt it. I dont agree that there is any such thing a pcos though.It is all undiagnosed thyroid and like cfs only appeared after the TSH test and levo.

MiniMum97 profile image
MiniMum97 in reply to Hidden

I agree that some cfs and me diagnoses may be untreated hypo (hypothyroidism should be ruled out before diagnosing pcos). There is however an increased likelihood of having pcos and autoimmune conditions not just thyroid diseases. Do you not think it’s more likely that pcos may have an autoimmune cause (as per some research last year) and this is why there is a link between pcos and autoimmune conditions inc thyroid disease? I would be very interested to read any research supporting your conclusion above though...

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Hidden in reply to MiniMum97

There was a small study done that demonstarted that when giving thyroid hormones the cysts on the overys disappeared.There was talk of a larger study. I am mainly just basing my opinion on pcos not having any symptoms that are not also thyroid related and its immergance following the TSh test. It is quite a new desease. Been diagnosed myselfbut all of my symptoms I havenow realsied were thyroid related and any treatment for PCOs was just band aid.

MiniMum97 profile image
MiniMum97 in reply to Hidden

Interesting. I was diagnosed with pcos in my early twenties. My main symptom being increased hairiness. I wasn't aware this was a hypo symptom but obviously a classic pcos symptom? I've linked to the research from last year below which indicated that PCOS may itself be an autoimmune disease (GnRH autoantibody):

medscape.com/viewarticle/87...

While looking for the above also came across this:

endocrineweb.com/news/thyro...

Which is also interesting as it seems to indicate that women with both PCOS and autoimmune thyroiditis have lowered testosterone levels. Interesting as I was diagnosed with PCOS in early twenties with an ultrasound and raised testosterone in blood test - when I first started feeling unwell due to my thyroid a few years ago (early 40s), when I first went to GP I thought it might be my lady hormones so they tested all the normal culprits and my testosterone levels had normalised. As PCOS is not curable this was strange and the doctors had no explanation other than "hormones fluctuate"!. I had noticed, however, (and this has continued to be the case through my hypo diagnosis, treatment with levo, and then being diagnosed with graves (possibly as well as hashis) that my PCOS hirsutism has definitely not as bad as it was before I started becoming unwell with my thyroid (fewer hairs, thinner hairs and they don't grow as quickly).

All very interesting. Having had both conditions but been generally a bit unwell with something or other since puberty (I always said I felt like my immune system didn't work properly!), I am inclined to conclude that PCOS is its own separate auto-immune condition. It certainly made sense to me when reading the above research as I know my friends with autoimmune conditions generally feel run down, tired, unwell (with good days and bad days of course) even when their "symptoms" are being treated. It will be interesting to read about new research coming out on this and automimmunity in general (and hopefully a cure!)

I was once told by a doctor who saw my vitiligo that it was because "as a woman, I dont scrub my skin hard enough". I was so shocked that I was speechless. Now he would not have left that room in one piece!

MiniMum97 profile image
MiniMum97 in reply to serenfach

Wow! I have no words!

Told a senior GP at my surgery during a discussion on Hashimotos that I knew I was still under medicated because my body temps are rarely 36 or over. He told me that low body temp is a fallacy. You just “think” you’re cold. Told him no, I take my temp twice a day and keep a record of it to monitor it! I no longer see this GP! It’s shocking how they treat us and how uneducated they are!

LindaC profile image
LindaC in reply to Rita-D

Fallacy! You and me - I've been 34.5C [lowest 34.4C] in August. I have the heating on right now until I 'thaw through', but they won't accept it. I've taken my temp since May 2010 [don't bother much now, unless I'm really, really ill... only then just curious - using a shake down mercury thermometer]. I usually say, "My husband - a [deceased] Consultant's son - is perfectly able to operate a mercury thermometer... as I am a digital one ;-)

Once my temp was at 35.7 C in the presence of an endo [me with layers of clothes + a boiling hot hospital] - his was 36.3 C so he just shrugged his shoulders - I was there for low temps and punch-drunk with the cold!! Worse thing is, when the GP [rarely] takes temp. in the ear, it has shown up normal. My low temps - in winter - room 25.9 - 26.4 C - I'm cold to the touch, punch-drunk, stumbling and plain ill with fatigue. No one is listening. I feel for you. xox

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