64 Comments
Mar 25Liked by Madelleine Müller

“I can get you a prescription for a gym”, “Everyone is tired, you need to pull yourself together.” “If you wanted to you could do it” (be better). “It’s all in your head.” I was also told I was completely healthy, sent to websites that said in their introduction that they were not to be used for ME/CFS but I was to ignore that, that I was wasting NHS time, money and resources, that as I refused GET I was refusing treatment and was thrown off the clinics course, that of course I would feel bad if I didn’t DO anything, that everyone would love to not work (on asking for a sick note) and lie on the sofa all day doing nothing, but not everyone has that luxury, why do I want a check up every year I’m not ill, it’s a made up syndrome, that’s not a real illness, ME doesn’t make you ill why do you want a flu jab, you can’t have a flu jab/covid booster ME isn’t a real illness,

After a gall bladder operation where the anaesthetic made me feel absolutely awful, like my head was about to implode from the pressure (a warning sign that was completely put down to me faking it because I said I had ME), was constantly being sick, couldn’t walk without falling, was in and out of half consciousness - I never saw a nurse or dr on the recovery ward (already labelled awkward) but the health care assistant kept telling me I couldn’t be as bad as I was, I was being melodramatic, as she reluctantly helped me to the toilet (cos I kept falling over) she said everyone gets tired, and it didn’t matter how much I played up I couldn’t stay overnight (I was desperate to go home to die - I felt that bad) and to buck up. She refused to allow me on the bed afterwards and forced me into a chair even though being upright made my head hurt so much more. Eventually she found me curled up, sobbing, back on the forbidden bed, clutching my exploding head, and said ‘Oh you are taking it quite badly, aren’t you’. I discharged myself (well my husband did when he was allowed to), sent me home with pills that I was highly allergic to, and I actually thanked her for looking after me! Somehow I’m still here to tell the tale.

There is more, but basically I’m always told I’m making it up for attention.

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author

Aaaaaargh! This makes me so angry! Of course you’re not making it up, grrrr! This idea that people do things for attention just needs to stop. I’ve also had a doctor say ME is not a real disease… urgh! Thank you so much for sharing. It’s important for people to understand what we go through on top of illness, Lots and lots of compassion your way 🌻🌸

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Mar 25Liked by Madelleine Müller

I seek attention all the time obviously 😵‍💫- that must be why they say it - the last time I went to the drs specifically about my ME was about 10 years ago. I’m on no drugs for it - yet get accused to wanting drugs all the time. I mention it in passing if I feel it’s relevant. Or when wanting jabs. I’ve now been diagnosed with very early CKD - I’m on all sorts of lists for that, get regular checks ups without asking, am automatically asked how I am (it doesn’t impact me at all, not one iota, was found on a blood test only whilst looking for something else, and is incredibly mild) it carries so much more weight than the actual thing that has disabled me for 15 years!

Thank you for the compassion. I hope you’re keeping as well as possible and resting like a professional.

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I sometimes wonder if the whole “you’re just seeking attention” is a collective childhood trauma that too many people seem to be reliving and projecting onto patients… just thinking out loud.

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Mar 25Liked by Madelleine Müller

Hearing this. It’s always projection, only when on the receiving end it is so incredibly difficult to see this (Is for me anyway).

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Mar 25Liked by Madelleine Müller

I recently told my psychologist that I didn’t and don’t receive positive attention for illness. Growing up it wasn’t a reason for indulgence, just regret/mild disapproval. That culture had the idea that if you ignored the patient as much as possible they would get better quicker. So why do people assume we are “attention seeking”?

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author

Great question! I’ve mainly been ignored due to illness… no positive attention. I don’t get why people would think so either.

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That was terrible treatment. I have another ME friend who had a horrible reaction to anesthesia and ended up hospitalized for a week.

Really sorry you went through that... I hope those involved learn how wrong they are to treat people like that.

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author

That’s so terrible for your friend! Hope she is as ok as can be 🌸

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Mar 25Liked by Madelleine Müller

Devastating to hear that. I am so sorry to hear you have ever been said any of these things once, never mind the accumulation. There is so much misinformation and mistrust on what it is that is is trying to be achieved.

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Mar 25Liked by Madelleine Müller

I was cringing reading that awful list. I get pissed off if my rheumatologist says that I “shouldn’t “ have pain, when I do. I don’t know what I’d do if I heard those things. I’m sorry.

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author

It’s kind of equivalent to the “but you’re so young you shouldn’t be ill” thing that I’ve heard too many times — as if I’m doing something wrong.

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Mar 25Liked by Madelleine Müller

Reading through these comments is both devastating/horrifying and validating. So many of us have had doctors treat us badly in varied ways but especially women and especially dismissing our problems.

Recent problematic things: "No, it can't be perimenopause, you're only 44" (number one, wrong, number two, then tell me what else it could be instead of saying I'm wrong) and "No, there's nothing wrong with taking this pill every day forever" (except that there are side effects and they get worse over time and there's rebound reaction to the pill that's making it super hard to come off of)

Particularly bad doctor memory: Late teens, had a yeast infection but didn't know that was what it was, was terrified it was an STI (because it was the 90's and that's the first thing that always came to mind), the doctor basically told me to stop being slutty and proceeded with an exam that was super painful because of the inflammation.

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So true, it is both horrifying and validating at the same time. It’s so detrimental (and gaslighty) not to be told of side effects and that there would be ‘nothing wrong’ with taking it. OMG a doctor basically telling you not to be slutty… I have no words. Uf and the pain. Arrgh, I had a painful STI exam once too I can still feel it! Eek.

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Mar 25Liked by Madelleine Müller

It was so awful. And I was too young and frozen to know how to advocate for myself and to say, "stop the exam, it hurts."

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author

Oh no no no! That’s traumatic. So sorry you went through that 🌸

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Mar 25Liked by Madelleine Müller

Thank you. It's helped to have women like yourself acknowledge the wrongness of it after the fact.

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Mar 25Liked by Madelleine Müller

The same interview with Dr Blasey Ford I referenced in an earlier comment also discussed how consciousness raising is essential so we recognize assault, even in retrospect, rather than experiencing it as ‘everyday life’. That should never have happened Kathryn.

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author

Ahmen!

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Mar 25Liked by Madelleine Müller

Thank you Michelle. I really appreciate you phrased it this way. And that's an interview I'll look into. I know too many women who have had variations on this experience and we must talk about it more.

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May 17Liked by Madelleine Müller

When TF did they think perimenopause starts?! That’s unbelievable. Please, please tell me they were a very old, soon to be retired man? Or a very fresh-faced one, maybe?

My friend has a TikTok all about Women’s Health (she’s a physical therapist) and gives a lot of advice about Perimenopause. Here’s a link if you want to check it out: https://www.tiktok.com/@drwendy_physicaltherapy?_t=8mPlG90THA3&_r=1

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May 17Liked by Madelleine Müller

It is a woman in her early thirties at a place that supposedly specializes in women’s health. I won’t be going back. And I explained to her why. Thanks for the link. Will check it out.

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She’s in for a rude awakening in a couple years.

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Mar 25Liked by Madelleine Müller

For me there’s been a few things. Only when I hear the story of others I feel I had a lucky escape in respect of what’s been said to me.

For 17 years I was told it couldn’t be migraine, too hard to diagnose, it’s not the pill, it’s not the implant. Dismissed every time.

In the 3 years before diagnosis, I was misdiagnosed with tension headache. I could barely drag myself in, physically couldn’t sit up, was struggling to cope and wanted to end the pain and suffering through suicide.

Only at the point of complete disability was I told (what I already knew to be true) “yes, it’s migraine”. Followed by “you have a low pain threshold”.

As much as I appreciated the text book reference, I knew this wasn’t true after suffering in agonising silence all those years.

Recently, I’ve come to realise that the way I treat my body before was dismissive and I wonder at the correlation between that and what was reflected back to me for all those years?

I’ve since learnt to validate my own pain, suffering and lived experience. I don’t need anyone else to do this for me now. I hope to inspire others that they, too, can learn to do the same.

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author

That’s a lot of dismissal of severe pain! And arrrgh.. ‘low pain threshhold’… no, it’s an out of this world high threshhold cos you’re still alive.

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Mar 25Liked by Madelleine Müller

‘Go lie in the sun love’ when presenting with chronic pain,

‘Stop using big words you do not understand’ when I tried to tell him that Graded Exercise Therapy was no longer recommended by nice for chronic fatigue. He also suggested I review my (already healthy diet) to resolve issues that are side effects of medication I was given and would not believe I ate healthy.

Another consultant told me not to have a hysterectomy even though it is not his specialist area as apparently periods can’t be that bad.

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author

Aaaaargh so infuriating and condescending. These things should not have been said to you, it’s terrible. I too have doctors suggest diet changes, when my diet clearly wasn’t the issue. Much compassion your way 🌸🌺

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Mar 25Liked by Madelleine Müller

I had a doctor say something similar to me. I had gotten normal results back and it made me so upset and defeated that I started crying. The doctor then gets up and opens the door for me so that I can leave (and finish my crying elsewhere). He then says to me “most people are happy when they get those kind of results”.

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author

That’s really dismissive too! They don’t understand that a diagnosis is important when you know there is something so wrong with your body.

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Mar 25Liked by Madelleine Müller

Oof Lisa, I’ve cried when a doctor told me I was healthy, because they’re telling you that feeling so ill is just normal for you and so there is no hope of recovery. Who wouldn’t cry? Also they’re telling us they’ve decided we’re ‘imagining things’ which is rage inducing.

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Exactly!

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Mar 25Liked by Madelleine Müller

It’s certainly a possibility. Or a God complex. How dare we patients know more than them, or present with a problem they either can’t solve or never learnt about.

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Mar 25Liked by Madelleine Müller

Yesterday I listened to Dr Christine Blasey Ford on We Can Do Hard Things podcast. She said that, as a sexual assault survivor she finds “I believe you” to be an odd response because when someone says their car was stolen, no-one says “I believe you”. Its a form of testamentary injustice.

I realise now that when a doctor said he believed me, it carried a slight whiff of ‘some other patients are not to be believed’? A blend of thank-you but also wait, what?!

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Yup, I agree, it is an odd thing to say. And I too have mixed emotions about it.

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Such a good point. It’s like when I see recent articles stating “long COVID is real.” Ummm, it’s been at least 3.5 years since the scientific world recognized this as real. It’s like the default is that these things aren’t to be believed and the person stating they believe you wants a cookie for stating the obvious.

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Mar 25Liked by Madelleine Müller

According to Glennon Doyle (talking with Dr Blasey Ford) being believed IS the cookie, at least as far as patriarchal structurally misogynist late capitalist medical industrial complex is concerned.

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author

Yes, it’s almost a trophy and not a given.

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Mar 27Liked by Madelleine Müller

For me it was a doctor who told me in 2002 to walk everyday and try to increase it to 20 minutes. I was moderate at that point. There was little information about ME at that time and I was newishly ill and desperate to heal, as many of us are, so I tried. Even as began to feel worse (I hadn’t heard of PEM at that time). It led to me downtrending to severe. And when I saw this doctor a few months later, even after walking when I felt like shit, he said, “let’s talk about how much of your illness is lack of motivation”!!! Urrgghhh!! Flames from my nostrils. I found a new doctor after that.

This was the most insulting after he caused such harm but there were plenty others: “you’re just depressed”, it’s stress”, somatic disorder diagnosis, “we all want to rest more” “is this because you just got married?” etc.

I am enraged that this BS continues! Solidarity! We are stronger together. Let’s organize y fight back!

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author

Aaaargh! That advice is so dangerous! I got the same advice and am bedbound now. And the worst thing is they don’t learn, this BS is still going on.

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Mar 27·edited Mar 27Liked by Madelleine Müller

"It's not terribly social, is it?" said my doctor when I told her I loved to write. It was close to a decade ago and I still want to tell them to F off. 🤬

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author

Wow, that’s a new one! Grrrr… so… infuriating!

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It's not the worst, but it irks me still! Thank you for asking 🙏

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It's so infuriating to hear these stories! Not being seen and heard as a sick person because the numbers don't correspond or whatever else!

With Long Covid, I've been getting plenty of bad advice, for instance "it's not LC yet because it's only been six months" (my doctor at the time was sure that I needed to be unwell for almost a year for him to even consider it.)

Other things: I've been having phases with low iron since I was a teenager, plus have had issues with dizziness since then, too. Up until recently, not a single doctor even suggested looking at the sources of my dizziness, because "young women just tend to experience some dizziness" 😠 (and/or blamed.it all on low iron) And I finally went to an iron clinic where I found out that I've basically been taking iron pills for naught for two decades, because my body can't really access that source of iron. Plus, none of my symptoms have gotten better, even though most doctors expected me to be magically cured now 🤦🏻

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author

Infuriating indeed. Aargh, I’ve had various variations of the “young women just…” so many times, too. It’s so dismissive.. and sexist.

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Absolutely. And, as it often turns out, it is indeed something that is wrong with women, just that no one bothered to take us seriously and spend more than three seconds on our lived experience.

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author

Exactly!

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Not a doctor but a psychologist. I just got Autism Spectrum Disorder. So I met with a psychologist and one more to learn more about it.

This psychologist strait up said ”You are not like normal people”. 😑

Like what? Who the hell is normal? Would be a very boring world to live in if everyone was the same…..

WEl at the time I did not tell him anything. I just said at a later meeting that they was not good for me.

I wanted to know more what I just gotten and he jsut… Gaaah!!

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author

Oh my goodness! A psychologist said that! That’s outrageous.

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Mar 25Liked by Madelleine Müller

When I first got COVID and it wouldn’t go away, my longtime PCP did a CBC panel and a chest X-ray. When they came back normal, she told me, “you’re perfectly healthy, Amy.” I insisted I wasn’t. When I asked if she thought this was COVID still somehow keeping me sick (I had not heard of ME/CFS or other post-viral illnesses by this point), she said to me in a pretty exasperated tone, “Amy, your guess is as good as mine.” REALLY?? Because I didn’t spend years and years in medical school and residencies like you did, doc. So that’s a pretty sad commentary on your own expertise, or even on your care or resourcefulness as a doctor (make me a referral, if you have no good guesses!). I dropped her soon after, never to return.

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Aargh that’s so dismissive to be told you’re healthy when you’re suffering. Not good enough by this doctor.

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Mar 27Liked by Madelleine Müller

It’s negligent that ME & LC aren’t taught at most medical schools. Or worse if they are taught it isn’t real. It’s so infuriating and damaging. We need more doctors to be trained and knowledgeable. When doctors don’t know why you feel ill, they blame it on the patient.

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May 17Liked by Madelleine Müller

LC probably is being taught about at med schools today, but that likely only started within the last year or two. Those students are either still there or in residency. (Although Women’s Health shows that just because something is being taught about at med schools doesn’t mean it’s being taught effectively or to the best interest of all patients.)

The real problem is that ME is under researched, probably under diagnosed - or worse incorrectly diagnosed, and doesn’t have a straight forward treatment plan, like many chronic illnesses. As horrible as it is to say, hopefully the rash of new cases from COVID will bring some good news in the form of research and new treatments.

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Exactly!

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Mar 25Liked by Madelleine Müller

Here in Australia I’ve read that medical programs don’t offer any training in ME/CFS but there are 2 continuing educational modules by a patient advocacy group that come with continuing education points for general practitioners (PCPs) https://www.emerge.org.au/continuing-professional-development-2/

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Same in Denmark, we can’t even get diagnosed with ME/CFS, they lump it under ‘functional disorder’ together with tons of other illnesses primarily affecting women.

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Mar 25Liked by Madelleine Müller

Same here in the U.S. They don’t cover it at all. Tragic and ridiculous.

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Mar 25Liked by Madelleine Müller

Its a catch-22 - doctors study illnesses for which there are (perceived to be) successful treatments. Then they don’t see any need to do research on outlier symptoms and their poor understanding means there only treatments are partial symptom relief or persuading the patient ‘its all in their mind’.

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author

This is so true! Great observation!

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Mar 25Liked by Madelleine Müller

With regard to my memory loss after ECT: “It’ll get better.” Well, it’s worse.

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author

Oh no! So sorry to hear both about the memory loss and the dismissal.

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I have quite a list, but key performances are: (1) a doctor not seeing chicken pox when I was 13 (cause you know, the spots/pimples are hard to identify), (2) a doctor prescribing an antibiotic after examining my throat in almost complete darkness (3) comments about needing to lose weight every time when I come to labor medicine doctor to be accepted to desk work (4) a doctor performing USG of my belly (prescribed by another doctor) screaming at me that I am creating illnesses I do not have (after my own analysis the cause of pain turned out to be lactose intolerance…), (5) a whole list of psychologists’ comments, topped with the latest who said that she doesn’t understand why I am stressed by war next to our borders… Also, when my ex simulated ALS (which simulation of course was not discovered by doctors but with my own effort) one doctor blamed me for ex’s state arguing that I pushed him too much to live a normal life and another one told me that I am too caring…

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Oh no, I’m so sorry all this happened to you, it’s not right for them to say/do all these things. Aargh!

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Oof. That is a terrible list, Blue Cat Assistance.

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