Misogyny in Medicine: Dear Dr Dick – ‘Woman’ Does NOT Equal ‘Hysteric’. (cn: references to menstrual bleeding, chronic pain and miscarriage)

Back in January 2001, I had a hysterectomy at the age of 32.  I had begun fighting for one 7 years previously, after 15 years of pleading with GP’s and gynaecologists to find out what was wrong with my reproductive parts, and for all but one of those years being told that there was nothing wrong at all. (Because having  3-4 week long periods of bleeding, and then a non-stop period of bleeding lasting over 15 months is of course perfectly normal, as any person who menstruates will tell you). That I had 2 live births at all, let alone the two – now grown up – sons that I have, will always be a miracle to me.

Had I not moved to Sheffield in the 15 months before my surgery (because GP’s tend to be better educated about these things where there is a specialist centre for reproductive issues), I would not be alive. At that point certainly, both the care and treatment my GP and consultant gave me were amazing, and life saving. Having endometriosis, adenomyosis and Polycystic Ovarian Syndrome (PCOS), a botched sterilisation resulted in endometrial cells infecting the cysts around my ovaries, and my elective surgery began literally minutes before the blood poisoning already underway would have been irreversible.

So bad had been the pain that post-operatively I didn’t even need a paracetamol – any discomfort from having to be cut open was nothing at all in comparison. Overnight, I had lost a stone in weight just from the fluid retention in my uterus having been removed. Within weeks, I felt like I was re-born. I was, I thought, finally cured. I left my abusive marriage, and took my children 250 miles away to start over.

The single biggest obstacle to accessing diagnosis and treatment throughout the whole of that time was the succession of GP’s and gynaecologists who refused to believe that I was in pain at all – yet nearly twenty years on, I am more than aware that it is too often still a battle for women across the gender spectrum to receive any recognition of physical pain, let alone receive the right support for the reasons which they experience it.

It wasn’t my first experience of being disbelieved about pain – shortly after I started school just before turning 5, I began having migraines and ‘absences’ (which I still have). I had all but given up hope that those would be taken seriously. If you are a woman (trans or cis, non-binary, gender fluid or gender queer) or read as ‘femme’, then the chances are that the pain you experience is likely at some point to be disbelieved. That possibility is an even more likely assumption if you are black or of colour, and/or autistic and/or disabled.

I do know that there are many healthcare professionals who seek to work in partnership with their patients, and who listen to and believe their patients. I met one this past weekend.

Ever since a work accident when I was 18, my left shoulder has always bothered me. It would ache more in the cold and wet, and as the years progressed, it hurt more and more just to sit at my desk and work. The occasional aches became a continuous throbbing pain that only eased when I got home from work and layed down. The throbbing pain was joined by hot fire, tingling and pins and needles down my arm, and the bones began to crunch more noticeably. Then my right shoulder began to hurt too. Fatigue became nauseating, I developed allergies and transient symptoms. After a cardiac crisis, I was told to see a rheumatologist (since my cardiac crisis was a severe inflammation of the cardiac muscle and pericardial sac.

It took over a year, but then last summer I saw a local rheumatology consultant. If I had hopes of answers to what was happening to me going in, they were dashed almost as soon as the appointment commenced. For various reasons I will not yet go into detail or name names. But the ‘diagnosis’ I came away with was ‘an hysterical dependency’, along with the judgement that my disabilities were ‘a predicament of my own making’.

I rejected his recommendation to see a psychiatrist. He gave me a neurology referral grudgingly.

Yes, I have registered a complaint. I’m still trying to get a follow up from that complaint. And I’m not going to any detail yet because I haven’t decided if I can or should take that complaint further.

I was furious, and told my GP so, and demanded I get referred to another rheumatology department for a second opinion. I saw a second rheumatologist this past weekend, and got a second opinion. I am so glad I did.

She listened. She asked careful questions carefully. She went through my entire history with me, and helped make the physical examination as comfortable as was going to be possible. She was autism aware, and respected my intelligence. And then she gave me a preliminary diagnosis of fibromyalgia and arthritis, and ordered blood tests to eliminate any other underlying autoimmune issue. She was glad to hear that I was seeing a neurologist, since she was concerned that a neurological root for certain of my symptoms be eliminated.

She took the time to look me in the eye, and tell me that I wasn’t making it up in my head and that my pain was, and is, real. When she heard that I was sofa surfing, she asked how she could help with that.

The NHS, such as it still is, and what little is left of it, is responsible for such great improvements in patient care. It shouldn’t be unusual for a woman to receive the respect of being believed.

At the end of my first appointment with the rheumatologist I will refer to for now as ‘Dr Dick’, I told him that I knew my body better than he did. His retort was that he knew rheumatology better than I did.

Just like all the gynaecologists who told me the same thing, and who were wrong and failed to diagnose real problems which nearly killed me – Dr Dick was wrong because I DO know my body better than he knew his rheumatology, and he failed to diagnose real problems because of personal bias, and gaslighted me by trying to convince me that I was simply being hysterical.

I am not hysterical – but I am angry. And right.

 

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poem: when you were only seven

we were kindred once

though we did not know how fragile

were the bonds that bound us then;

for you were only seven, and i was only ten,

 

and when we danced,

you would always spin too fast

and i would catch you then –

when you were only seven, and i was only ten

 

we built a castle and commanded

armies loyal to our cause

and we sang to knock the clouds across the heavens  –

when i was ten, and you were only seven

 

and fast you ran, to scare the fiery dragons

far away –  then you’d wish them back.

that fast again we’d play, but then –

you were only seven, and you would not be again

 

the years advanced upon our armies,

wiping them away – and though it broke your heart

i never heard you say, but you kept a peace and offered it to heaven

that somewhere, you would be forever seven

 

and heaven has you now, and tho its too far to see

the destroyers of  our armies could not take thee from me –

and one day we’ll play together once again.

like we did when you were seven, and i was ten.

 

 

 

 

 

 

 

 

Poem: I Know Thee, Fear

I know thee, Fear

 

You that stalks my halls like the sweetest of traitors

keeping me from my king,

(with most earnest and well meant intention) –

yet you look at me, as if offended that I should speak mention;

 

as if I forget myself,

as if I have broken some pact or some treaty

I did not sign;

am I supposed to be quiet? but I am too tired

not to speak.

 

Maybe I am incomplete

not yet, or not enough or weak

do not speak of days when I have not praise

but bitter tears

 

Yes, I am not brave.

 

But there are days

when I know that even though

I am the helpless fish

in your coarse hands

 

you will sometime grip too tightly

and I will slip

quickly, quietly –

– oh let this stream swift carry me away!

 

I know thee, Fear

 

though I would have you

be a stranger to me.

 

Poem: We Are The Bodies That Tell – a poem for #CripTheVoteUK

We are the bodies that tell

Of the lies to us all you would sell;

We are the price, we are told,

Both hostage and ransom

The flesh and the blood,

Yet silence can never be bought, or be sold.

We are the bodies that speak

No matter how seemingly lowly or weak

you perceive, or have beaten us down to become

Our stories are many

And often unsung

Of our dead, we count and sing out, every one.

We are the bodies that value

What truly cannot be bought;

We are the bodies that love and support,

Creating and giving, reaching

stretching, though never quite meeting the end,

Yet still with the strength to stand up, and defend.

We are the bodies that tell

Of a far better truth than the lie you would sell;

We’re not the blame, or the shame, or the guilty –

We’re the flesh and the blood that pay for austerity,

And we’ll give voice even when we cant sing,

We are the bodies, no matter how broken, that never ever give in.

 

Shadows and Ghosts and Deep Fried Mars Bars: on living with PTSD [CN]

What my brain looks like.
What my brain probably looks like.

 

I have been quiet for a while. Over the last couple of months I have stayed away from twitter and Facebook, and spent most of my spare time at home, avoiding people and life as much as I can. I am no longer a happy introvert. I am an unhappy hermit.

I have PTSD.

It’s very early days – diagnosis is recent. Assessments are being done, what treatments and support will be required are being evaluated.  The path to recovery has barely started, but at least now I know there is a path.

So I hang on, between the appalling sleeplessness, the incessant noise in my brain from flashbacks I cannot control, that tight constriction in my gut from the anxiety and fear, the mind numbing worry of how I might cope financially if I have to stop working, and the nerve shredding panic every day as I keep working. My short term memory is non-existent. Processing information and communicating is non-starter. The world appals me.

My brain might as well be deep-fried Gouda. Or perhaps a deep fried mars bar.

It was triggered initially last year, and I was only barely coming to grips with the fact I might need some serious help when events in May this year triggered a whole new episode. Now my thoughts ricochet like a pin ball, backwards and forwards between one shitty memory or other, drenching me in images that leave me shaking like a bad Bond cocktail.

I have never been more grateful for the wonders of modern medicine – the little white pills that are starting to provide some measure of calm in this storm, and oh! the joy of actual sleep. I crave sleep. If I had the choice right now I would curl up under my duvet and sleep through this whole damn thing.

So I hang on. I am not the first to walk this path – there are many (too many) out there who walk, and have walked, this way before me and I tell myself that this is something I can survive, because others have survived before me. This is a land filled with too many shadows, too many ghosts, too many memories that I would rather fling out to the farthest reaches of space and never, ever, have to live with again.

The threads that hold me together right now are not as bare as they sometimes feel. Hope holds on, however worn.

My sons, full of love and care and concern, keep my feet rooted to the earth. My faith keeps a flicker of hope and love alive in my breast. Prayers escape from lips like wisps of smoke, and I try and recall that these are the most precious of all prayers. Friends and family who have coped, and continue to cope, with so much, inspire me: you have such courage, such faith!

For those who have been kind enough to stop by and read this blog for the last few years – thank you, and please be patient with my silence.

I haven’t left. I am not leaving.

“I know that the whole point—the only point—is to
find the things that matter, and hold on to them, and fight for them, and refuse to
let them go.” ~ Lauren Oliver