This book > Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery

[Mic67]

Hi all,

Thought some may find this book interesting, and empowering. I have this on order and have read a lot of reviews since its release.

It is split into 3 parts: ‘Part 1 – Overlooked and Dismissed: A Systemic Problem’, ‘Part 2 – Invisible Women in a ‘Male Model’ System’, and ‘Part 3 – Neglected Diseases: The Disorders Formerly Known as Hysteria’,

Some quotes:

“To be sure, depression, anxiety, and prolonged stress can cause specific physical symptoms, but these symptoms are not limitless, nor are they actually unexplained. When doctors invoke these labels for symptoms as diverse as vomiting, paralysis, and sever, unending pain, it is the concept of the somatoform disorders--hysteria dressed up in modern garb-- that allows them to do so.”

“research has pointed to women's tendency to delay going to the ER when they're actually having a heart attack as one factor that may contribute to their worse outcomes compared to men.”

And this!! > “And whenever you hear a condition described as a "contested disease,"the odds are good that the "contest" is between, on the one hand, mostly women patients who believe their condition to be an organic one and, on the other hand, a medical establishment that assumes their "medically unexplained symptoms" are all in their heads.”

Mic

[tamarava]

Thank you for sharing this book with us. I do believe it is relevant to what we women face with the medical establishment. Even women physicians can be very dismissive. I feel more comfortable with a female doctor but sometimes have had to part ways due to the fact that some of them do not like to be questioned. Thanks, Mic67! I am going to look into this book.

[Hidden]

I can’t read books anymore - not even John Grishams or Val McDermit - concentration screwed after years of all this medicalisation of my life

To anyone who has symptoms of FND - have all your vitamins such as D and B12 and your autoantibodies been thoroughly tested and do you get copies of results yourself I wonder? All autoimmune diseases start with or cause chronic fatigue but the worst offenders are often very hard to get diagnosed - Sjögren’s, Lupus, Hashimoto’s, Vasculitis for example,

I was diagnosed with Hypothyroidism about 15 years ago and put on Levothyroxine. I was never told it’s autoimmune, never asked anything or got my blood test results but even if I had I wouldn’t have known how to interpret them. As a child onwards and all through my 3 pregnancies there were many clues to autoimmune diseases such as sunlight sensitivity, episodes of alopecia, rhinitis, severe eczema. But I just battled, on oblivious, taking occasional courses of steroids, when all my problems would immediately resolve, only to return once if tapered off.

Then one day, in 2011, having recently lost my mum and already lost my dad to sudden and premature heart failure - I got food poisoning and several nasty viruses in rapid succession. A few months later I woke up with burning soles and a bitter taste, then both knees and both wrists felt fractured for no reason.

I saw several GPs, blood was taken and Rheumatoid Arthritis thought to be the problem. It was explained to me that this is also autoimmune. My body attacks itself.

Ever since then I’ve been taken reasonably seriously and believed.

Apart from by neurolgists (I’ve had 3) who seem to think that if it’s not a neurological disease then it’s functional. They have no way of seeing things 3 dimensionally apparently and two GPs have told me they are a strange breed all of themselves.

So, 15 years after being diagnosed with Hashimoto’s, 7 years after being diagnosed with RA, 2 years after being diagnosed with Sjögren’s and 4 months after finding I have significant degenerative disc disease I’m now being asked to accept that I also have FND.

Perhaps they study Neurology only to realise half way through that they ought to have studied Psychiatry instead? So they read the odd book and decide that this licences them to mix up both.

Then they decide that, far more important than choosing to believe each patient who presents with palsy or tremors or limb weakness - they could just re-invent the concept of conversion disorders? And get good funding to do a PhD in something that they decide to call Functional Neurological Disorder - even set up a website in this name - CBE for services to Neurology and psychology round the corner without having to do any real work at all - apart from see the patients who have real neurological conditions of course. But they tend to be hard work so let’s relegate them to the charities and their families and the appropriate respite and benefits and be able to get home a bit earlier and get off to more conferences with freebie 3 course dinners etc - spread the word about this new FND they have by invested invested so much in.

This way they can develop their antennae for patients, mostly women, who might otherwise be demanding of them. If they can find some formative abusive events and an onset of menopausal hormones then this is the absolute gift. If there’s been some alcoholism or a real diagnosis of something non neurological then that’s okay - it can always be called functional overlay.

What a wheeze, what a joy - no need to do any real hard core science - the gate is now wide open and fully funded to get rid of lots of their patients into undiagnosed oblivion. “Oh but .. well don’t worry because it’s not actually a really bad oblivion or a nasty no man’s land because it’s just functional- which is a positive thing for you too.. and we believe you - yes we honestly do (because we have had to convince ourselves first and that took a stretch of the imagination - so now believe you just as we believe ourselves)”.

This way they can now focus on further funded “research” into functional disorders and on telling all their colleagues and students ways to identify these functional patients by trickery rather than bothering with expensive and sometimes invasive methods of diagnosing or excluding.

Brain MRIs and lumbar punctures and EMGs are a last resort option for the suspect FND patient unless there are other reasons to run these - such as GPs or rheumatologists , psychiatrists or immunologists or cardiologists lurking in the background suspicious - medical colleagues who might see through this functional malarkey - need to watch out for them. Mind you they have their dodgier practitioners too - look at dear old Harold Shipman - so locate the like minded among them and there will be less chance of them being exposed as the emperor’s invisible clothes. They don’t have to use poison to kill ‘em off - patients may even kill themselves off first if the neurologist gets extra lucky!

Otherwise it’s game on to consign as many patients as they can get away with to this smelly dark pit of the non diagnosed. These FND patients won’t be able to clamber our of this pit to question or testify to the clinician’s incompetence because they have dug the pit very deep and it’s not the same pit as already exists for ME or Fibro or IBS or tinnitus -so hopefully no chance of any one coming along to spot all these deep pits full of miserable, suffering people. And if the inmates dig tunnels between them then they will just find others with more longstanding conversion disorders.

And the small amount of funding allotted towards their welfare keeps on rolling in to make this project very worth while - a kind of Guantanamo Bay for those who aren’t well enough or functional enough to escape or even claim disability benefits. Ticks all boxes - saves the NHS a fortune as long as they don’t try to access fully trained psychiatrists - and even then there are a few can be made to see it the neuro way. Saves the state a fortune so the politicians are on board too. Yay party time!

Sorry for rant - I’m turning Orwellian or Atwoodian here - but the journey has become increasingly dystopian of late.