In the Shadow of Trauma

Content warning: descriptions of sexual assaults and medical trauma.

Image: Charlie Fitz

Is patience a virtue?

The words patient (adjective), patient (noun) and patience all come from the Latin word patiēns, defined as; suffering, enduring, allowing, submitting.

Too good to be true

I am sitting in almost perfect silence. I can discern the quiet hum of air conditioning and the muffled, yet comforting chatter, of Spanish and Catalan nurses spilling into the room. A week earlier these welcomed sounds would have been difficult to pick out over the constant ringing that only I could hear. To my right there is a large window with a view from South to West Barcelona stretching from the edge of the Mediterranean coastline, across the city to mountainous terrain. For a moment I feel like the wealthy protagonist in an early 20th-century novel who has been sent away from the city smog to some beautiful spot where the clean sea or mountain air will cure their ailments. My mind cannot help but relate this experience to something I have read, to fiction. I am a world away from lying on the hard floor of a hospital Accident & Emergency Department, no available beds, overworked physicians and a suspicion from the consultant that I am ‘not really sick’.

If hysteria persists

Ten months earlier it is the summer of 2018: I'm lying on a sofa. An icepack on the back of my neck. I have an unexplained migraine, severe pain behind my eyes, down my nose, in my cheekbones, through my teeth - and, of course, the sharp ringing. I’m having difficulty swallowing and my breathing is laboured. My health is precarious and high-risk, but today I refuse to seek emergency medical help. I am a seasoned patient and this moment has a familiar air of crisis about it but I cannot face a hospital (I simply do not have the energy to fight my case and if I go to my GP that is where they will send me).

My partner is flicking through my medical paperwork whilst searching online support groups, forums and charities for private neurologists and neurosurgeons who have a good track record in the Ehlers-Danlos Syndrome community (a group of genetic conditions, one of which I was diagnosed with 6 months prior), and particularly with patients with Craniocervical instability (a complication that I had suspected I have had for a while).

‘Have I failed you?’ My partner asks. He hasn't. He finds a GP referral letter to gastroenterology from the previous year and sighs. The letter leads with a bullet-point list of my significant medical history. From 2007 to 2017 it states; rape, depression, history of rape, sexual assault and assault. We share a look that says, 'it's no wonder I’m so often labelled a modern-day hysteric'; if the dangerous cultural trope fits. If hysteria persists.

Break-time

My first memory of a man touching me without my consent was a teacher I had when I was 12. This teacher would invite students, usually girls, to stay behind at break-time to clean his blackboard, having to stand on a chair to reach the top whilst he watched us. He would then give us all a handful of minstrel chocolates as a reward. We all knew that whatever was happening was odd, but the chocolate seemed worth it at the time and the idea that we were somehow special, the chosen few even in the eyes of someone we found repulsive carried weight as an insecure preteen. I didn’t understand what was going on or the potential danger we were all in. This teacher was known by students as a “creep”, but I suppose we all thought that if he was allowed to be our teacher, how bad could he be? At this point in my life, I still considered school a safe space.

At the end of one of these perverse break time sessions this teacher came close to me and slowly slid the back of his hand up my ironing board chest, saying something to the effect of ‘you don’t want to catch a cold’. I felt threatened enough to never volunteer for break-time blackboard duty again, but I also shrugged it off, the first of many times that I would shrug off intimidating, predatory behaviour. I didn't tell anyone until I was an adult, I took it as the norm. My induction into the male gaze, into young female sexualisation and objectification, had already begun. I’d received explicit catcalls from grown men whilst wearing my school uniform for a few years by this point. I’d become accustomed to staging loud phone calls with a fictitious policeman father who was on his way to meet me whenever a suspicious man would follow me home from the bus stop.

When I began writing about the history of my body – its illness, its moments of trauma, its narratives and the people, mostly men who have violated it – this half-suppressed memory of the teacher came back to me in full colour. I had never really forgotten it but it happened at a time in my life when it seemed insignificant. With a parental divorce and a change of schools, the sorrow of leaving my friends far outweighed this uncomfortable, half-understood moment of violation. After sketching out my recollection in a moment of dreadful realization, I typed this teacher’s name into Google, learning that roughly 6 years later he had been imprisoned for sexually assaulting a minor in an educational setting.

My first thought was one of guilt and responsibility, ‘perhaps if I had told someone of his inappropriate behaviour, they could have connected the dots and maybe prevented his victims suffering’. But 15 years ago, would it have made a difference? Or would I have been told that it was a misunderstanding, a mistake? ‘Now this is a very serious accusation, are you sure?’ Would I have been made to doubt myself through fear of being reprimanded? Would this have been my official initiation into a warped womanhood?  A womanhood in which the way others view your body is your defining feature, a body that is not your own. A womanhood in which the stories of your body are told to you by someone with more authority.

Perfect victim

There are two life events that stick out when I recount the stolen narratives of my body, they are years apart seemingly different, yet startlingly similar. Scripted verbatim and performed back to me, they are perhaps not the most dramatic or visibly frightening bodily violations I have experienced in my 27 years. However, they impact me daily, whereas other more violent events have become flickers of memory. They hover permanently in between my thoughts, primed to come to me in an involuntary rush, triggered by a smell, a name, a sound, a touch, a word. They simultaneously hold me back, frozen in time, and push me forward in fury. They do this because in these two experiences, both as the events occurred and, in the fallout, I was rendered powerless. My account of my body was deemed false, I was an unreliable witness, my narrative discarded and unrecognisable narratives forced upon me. I was twice violated; first by the experience and then by its false retelling.

The second of these two events took place in 2016 in a particularly traumatising encounter with a doctor, which I will return to. The first was 4 school years on from the experience with the maths teacher, I was the other side of puberty and my initiation into the warped womanhood crafted by a civilization priviledging white, able-bodied, heteronormative cis men was well under way, an internalised womanhood I am now unlearning each day.

It was autumn, and I was raped.

This time I did come forward, or at least the information came out. The details are hazy, but I was not believed. I was told that it was my word against his and that going to the police would cause me more pain than good. I was treated like the wrongdoer; various versions of the story spread like forest fires, I was ostracized by the people we both knew, I was moved out of his space. I wished I had stayed silent. I had wished the story or versions of it had never been heard.

Sadly, although the way the situation was handled was devastating, what I was told was probably correct: if I had gone to the police at this point in time it is very unlikely I would have received any sort of justice, as I was not the perfect victim. This rape was at the cross-section of every “grey area” there was at the time. Thankfully, these “grey areas” are being called out in popular culture more and more for what they are; victim blaming, a victim's reaction to shame, guilt or fear, and an incorrect understanding of consent. Whenever I write about this experience, I first have the instinct to clearly state exactly what happened as if to defend my account. My initial reaction is always to give proof, to explain myself. This is because I have been conditioned to view myself as others so often view women, as unreliable witnesses. I delete these statements after I write them.

I learnt from this experience that although rape is always a violent act, it does not always appear violent, loud, aggressive. It can be quiet, a desolating whisper; it can happen so fast you hardly register what has taken place until it is over. Although, in some ways, it is never over. I also learnt that you don’t know how you will act in these situations - will you scream out, kick punch, will you say no once and then freeze with fear? Will you just wait for it to be over? Will you pretend it never happened, will you tell someone; will you convince yourself it was consensual, even if your body and your recurring dreams remind you otherwise? Will you try to regain control afterwards by laughing it off? Will you come forward right away, if at all? Will you have to sleep on your parents' floor for years afterwards because of the nightmares? Will you replay the things you think you did wrong? You may wonder if this person knows what they have done. The real, long term ramifications of their actions. Will you ever have a healthy sexual relationship again?

I did not react how I thought I would; I was not the perfect victim. I was not the rape victim we had learnt about through Shakespeare’s Titus Andronicus, where an opportunity for a meaningful discussion on consent with teenagers in school was deeply missed. Titus’ daughter Lavina is chaste and virginal; she is the perfect victim. Her rape is violent and aggressive, her tongue and hands are cut off by her attackers to prevent her from identifying them, presupposing that this will be her mission after the attack; which it is. She goes on throughout the play attempting to identify her attackers to her father. Who is, of course, the truly wronged party, as the attack is really an attack on him, the man who owns her body - this is his story.

Although I didn’t go to the police, I did go to my doctor, and I did see a school counsellor. When a rape, sexual assault or traumatic event is recorded on your medical records - when it becomes part of your significant medical history - it casts a large shadow behind you for all of your future medical practitioners to see. This shadow can offer a simple, neat diagnosis for any unusual ailments that follow; particularly if you are not identified as a cis, able-bodied, white, heterosexual man. When I became aware of this shadow - at the height of my unexplained, undiagnosed, and severe symptoms - I privileged seeking help for my physical health over my mental health, although I am now learning there is not much of a distinction between the mental and the physical (I am my body). I began diminishing or denying any emotional pain or mental health concerns due to the justifiable fear that an underlying physical health condition may be missed or dismissed.

I am messy

I am not the perfect victim or the perfect patient. My health, like my history of assault, is messy. In my experience medicine doesn’t account for messiness. Messy must be solely caused by the patient’s mental state. Treating mental illness and physical illness in the same body was not an option I was given. I have encountered a cultural trend of disbelieving imperfect or hard to diagnose patients accounts that mirror disbelieving victims of sexual violence. And the two experiences feed into one another.

In 2014 I attended A&E with crushing chest pain, breathlessness and a sinking feeling. An instinct that something bad was happening and the knowledge that it was happening beneath my ribs. I could almost pinpoint the area that felt somehow wrong.

‘But does it feel like an elephant is sitting on your chest?’ I was asked on more than one occasion. ‘Would I be able to answer you if it did?’

I was 23. I was sent away, I was told I was too young for it to be anything serious and that I didn’t look ill, it was probably just the end of a chest infection; although I hadn’t had a cough or cold. It took two more A&E visits, eventually refusing to leave and an argument with a consultant to get a scan and a D-dimer blood test. A consultant who told me I was wasting a bed and his time but agreed to scan my chest as if a great act of charity on his part for my own peace of mind and to get me to leave. I do not doubt that he had seen many patients who look like me and sound like me and for them, maybe it was nothing serious. But privileging his assumption over my awareness that something in my body was seriously wrong would not have been worth

the risk.

The hard fought for scan showed a pulmonary embolism that had been starving a portion of my lung of blood for weeks, slowly killing the tissue in the area where I had insisted that something bad was happening - where it felt like a cavity or tunnel was opening up within my chest, where I

could sense death. I have since learned that I have Factor V Leiden Deficiency so I am at  high risk of blood clots.

I was admitted to a ward the night before I received the scan. I hardly slept; my mind went to cancer. My nan died of lung cancer at the age of 69, a couple of weeks before my year 11 exams, she had been going to her GP for more than a year complaining of pain, to be told she had back problems, not unexpected at her age. Her pain was a cancer that had spread from her lungs to her spine (undetected, despite her doctor or anyone who heard her hoarse voice knowing she had smoked almost as many years as she had breathed) and within weeks of discovering it, it would be in most of her major organs, untreatable. Everyone has a cancer story.

My mind was on cancer and like many of the narrators in cancer patient memoirs, I felt responsible for my illness, as if I had brought it on myself. I called for a nurse in order to confess all my sins. I told her that I had smoked, drank heavily and taken drugs throughout my teens and that although it was all in recent years behind me, my body had been pushed to its limits, I had done this to myself. She could see how scared I was, she could see how guilty I felt, she could possibly see the realization of my own mortality awakening. She told me it was okay, to try to rest and I could tell the doctor all of this tomorrow.

The hematology consultant I began seeing in the clinic after my pulmonary embolism diagnosis reassured me that I had not caused this clot. I have nicknamed this doctor “doctor listen”, as he interacted with me in a way not many doctors had at that point or would from that point onwards. He told me that he was saddened by my difficulty in accessing a diagnosis and that unlike him, many of his colleagues do not see the value of really listening to their patients and trusting their instincts.

I have since learnt not to disclose my history with substance abuse or sexual assault to most of my physicians, as it can take the focus of an already complicated story. I do not have the privilege of completely honest disclosure with medical professionals, self-fulfilling the infuriating and damaging prophecy of the fictitious television consultant Doctor House (the pop culture king of medical paternalism), that “all patients lie.”

I am sick

I never fully recovered from the blood clot in my lung. In 2016 after a year of intestinal bleeding, I was diagnosed with severe Idiopathic Gastroparesis by a gastric emptying study, a scan which revealed that my stomach no longer contracted or emptied correctly, the same year after a decade of severe menstrual distress I was diagnosed with Endometriosis by keyhole surgery. 12 months prior a GP frustrated by my multiple symptoms asked me to decide if my issues were gynecological or gastrointestinal as; they couldn’t be both. Asked to choose as though I could, as though I were willing them into existence. As though my body had misunderstood that illnesses could not cross the boundaries of medical departments.

The second significant event that comes to mind when recounting the stolen narratives of my body took place later in 2016 further down the road of my steady decline into a life lived mostly from bed, with fluctuating complex chronic and acute illnesses. I was hospitalised a few hours from home whilst staying with family at Christmas. I called my regular gastroenterologist who had me rushed into a local hospital for suspected spinal cord compression.

I stayed in that hospital for a week, nearly self-discharging after the incident occurred. The incident was a strange power battle between myself and the ward consultant. At first all the signs of spinal cord compression, including bowel incontinence, were taken seriously. An MRI identified a fluid-filled cyst on my spinal cord directly where I had been complaining of crushing pain for over a year, and I was diagnosed with Syringomyelia. 

At some point a group of neurologists had a meeting, most of whom I had and would never meet, and they decided the syrinx on the scan was a coincidence, or just a shadow (it wasn’t). They decided I did not have spinal cord compression, or anything related, and that I would be discharged with no treatment and only a follow up from neurology. I was scared, in pain, confused and frustrated at this sudden change of diagnosis and treatment plan without my presence or involvement, and I expressed this to the ward consultant. She became very defensive and, to my surprise, aggressive at this - she pulled the curtain around my bed, the first time she had drawn this barrier around us, and began to admonish me in hushed, furious tones about how ungrateful I was for everything she had done for me. My partner and my brother had briefly left the hospital, so I was vulnerable and alone. I sobbed uncontrollably and hysterically.

The ward consultant seemed almost pleased at my vulnerability, exclaiming that she had ‘figured me out’. She sat on my bed, stroked my hair without my consent, and told me I was beautiful before recommending a book called ‘It’s All In Your Head’, as she told me these new symptoms were psychosomatic and tried to re-diagnose my Gastroparesis as anorexia, attempting to transfer my care to the psychiatric team. To be clear, psychosomatic illness exists and are legitimate illnesses, but it is more complex than simply being 'all in your head' which as a book title stinks of gaslighting and accusations of "fakery". Approaches to illness and health should take the entire person into account, not separate us into parts that fit neatly into medical departments and a history of trauma should never be used as an excuse to palm a difficult to diagnose patient off onto another department. It can be both.

My Gastroparesis diagnosis had never been in question though, I had a paralysed stomach (confirmed by gastric emptying study which scans your stomach after eating) and I was on a prescribed liquid diet, as solid food put me at risk of a life-threatening bowel obstruction. I had worked hard to gain and retain weight and she was not a gastroenterologist. I do not know whether this was a reaction to me challenging her authority, or whether seeing me show raw emotion made her suddenly question every physical diagnosis I had received? I suspect a bit of both. Either way, a diagnosis holds power, a diagnosis can lift barriers to care, doctors have the capacity to withhold or withdraw a diagnosis. The doctor-patient relationship is not an equal one. And this doctor had brought into a centuries old, misogynistic trope that an emotional woman was manifesting physical symptoms rather than the fact a physically sick person was also experiencing mental distress. For her, the simple explanation of the hysterical woman was the most seductive conclusion.

Since then I have found hospitals difficult. I avoid A&E. I shake when booking appointments. My body heats up, I struggle for breath and often faint in waiting rooms. There is a kind of trauma that occurs when you are not believed again and again. When you come so close to serious danger because you are not seen as a reliable witness to the experiences of your body. A trauma that makes you appear again more unreliable in the eyes of the many who don’t look beyond the trope of the hysterical woman.

Back in my hospital room in Barcelona, I have a ten-day old wound beginning to heal on my back between my shoulders, drawing a line up the nape of my neck, up the back of my head ending level with the top of my ears. I no longer have any mobility in my neck but this is a small price for what I have been given back. My brainstem and nerves have been decompressed, for now. My stomach churns and digests more than it had previously, I can be upright without losing the ability to speak or understand. The pain is a fraction of what it was, my vision is back and clear, no signs of permanent blindness, I no longer have seizures, I can breathe and swallow regularly, my heart rate and body temperature is regulating more efficiently, I am beginning to walk independently with my old gait. There is a list two pages long of symptoms that are either significantly improved or are, for now, in remission. I had treatment for Cervical Medullary Syndrome, a complication of Craniocervical instability, an illness many physicians in the UK still deny exists. I gained access to this treatment after years of my own research, self-advocacy and 4 months of fundraising.

Before surgery I was told that this would be the hardest thing I would ever go through, I was warned of the trauma of such a huge neurosurgery. Before surgery I was calm; I was not scared, I did not feel powerless. The pain afterwards was manageable because it was explained, believed, treated, it was part of recovery. I met every surgeon who took part in that surgery, a few days before it was decided that I would have a jugular vein decompression during the same procedure, the first time these two surgeries have ever been performed together. This decision was made between my surgeons and I. We discussed the pros and cons, the risks and I fully understood and consented. This was how all the medical decisions had been made with this team of consultants pre and post op in Barcelona; openly, honestly, collaboratively.

Ironically, although I was going to be unconscious for 12 hours, with a group of men cutting into my body and deciding the position of my neck for the rest of my life, I felt more power, control and authority in this situation than I have ever felt in any other medical decision or interaction. I was treated not only as a reliable witness to the experiences of my body by these physicians but the primary author of my narrative past, present and future.

I did not however have the support of any of my doctors in the UK for this surgery. Soon I will have to return to the UK, I have been given so much back. I have been given a different life from the one I was living, certainly an easier and more comfortable life. But I am terrified, filled with dread at boarding that plane and returning to my friends and family, at seeing my 5-year-old nephew who I miss hourly. I am filled with dread because I have a lifelong, genetic condition that will always require me to have treatments and medical interventions. I will always be sick but I will not always be listened to, trusted and included.

I will always be ill, but I am sick of not being believed. I am sick of being silenced. I am sick of being patient.

*Endnote: this personal essay was written in August 2019, a lot has changed since then, my illnesses are still mostly unmanaged, covid is rampant, I am a shielder,  living with a fusion is hard but it is living. I now see a therapist and know I have complex-PTSD. I have not edited this essay to reflect this current stage of hindsight because I think there is something important about the moment I was writing from that I wished to retain.*