Throughout my life, education has been a stressful task; which only until recently – the cause of this stress and mistreatment became clear to me.
My brain is not typical and the world is set to “typical” with regards to all its structures and functions, including education.
Of course back in the 1980s there was not much available for children such as myself, deemed hyper intelligent, difficult and rude as early as infant school, going to doctors and child psychologists and being told I was on the spectrum for autism. Then in secondary school – a troublemaker, a bad influence and having an attitude problem.
Teachers would always say “I don’t understand you Charlotte, you are so intelligent, why can’t you do better?”.
All that was known to me, was that no one understood me and that I was a bad child. Excelling in subjects which I liked and failing miserably in subjects I didn’t, not even bothering – feeling like it was all a waste of time and might as well be an alien language taught by aliens.
As well as this, authority in any form would be like a red rag to a bull, as if being challenged to a duel and the victor would get to parade the beheaded throughout the school as the all hailing champion.
So teachers would be shouted at by me and my “patronising” tone became a honed skill which many would misunderstand and still do to this day.
My moods became violent with students and teachers which cemented the “bad child” label as well as the “crazy girl” label I had acquired due to my mental illnesses spilling out of me from 11 years old onwards.
So “bad child – crazy girl” was my new official name and once carted off to the loony bin at 15 – this was really the pièce de résistance, which shoved me into the labeled box which society still confines me to today.
After hospital and then art college, I descended into two different states from 2001 – 2004, a reclusive agoraphobic who only went out at weekends on class A drugs.
Then in 2004 after failing an HND in travel and tourism, as instead of writing research pieces on travel destinations and tourism operating systems; I would end up submitting creative writing pieces in a drugged up haze, these were prescription drugs, anti-psychotics and mood stabilizers. Not surprisingly I was asked to leave, proceeding to obliterate my brain with class A drugs again and alcohol for 3 years, putting myself in many dangerous positions, surrounded by criminals; lucky to come out alive, some didn’t.
After this wasted time the choice to go back to college was a hard one, however deciding to work towards getting a degree was a dream of mine. Beginning with an A level in philosophy was my starting point, which opened my mind to so much, allowing me to see myself and the world in ways that to this day continue to shape me. My tutor was inspiring, he had so much passion for the subject. Philosophy was an ideal subject for me, it is not constrained by neurotypical ideas, in fact almost the opposite.
After completing this course I decided to go on to do a full time access course at The University of Portsmouth, which is a year long course – which is the equivalent of four A-levels.
Politics, Sociology, Communication Studies and History were my chosen subjects. The staff were so kind to me and even though I had less idea of my difficulties then, they helped me to achieve the best.
Two of these tutors are still my friends and this is a great achievement for me, having never been liked by teachers before. This was when my first realisation came about of the fact I was different to most students; the tutors helped me get registered as a disabled student and supported me to the best of their abilities, preparing me to go on to a degree at TUOP.
Gaining acceptances on three different degree courses, History, International Relations and Journalism, I chose Journalism.
Once I left the comfort of the Access course, there was already a feeling that was reminiscent of school, the overlooked feeling, the feeling of being “odd” and “bad child – crazy girl” was tapping at my brain telling me she was needed, silencing her – these feelings were brushed away.
Within my first week a sinking feeling had taken over and the realisation that I would not see the end of the academic year or be successful was present.
The students were all 18 / 19 and being unable to communicate with any of them, becoming a loner, something which came naturally to me. The teachers already found me difficult due to me asking too many questions, challenging them as well as just being generally misunderstood.
One subject in particular was soul destroying; shorthand – my mental nemesis. The teacher was a strong, no bullshit woman, who displayed little empathy and did not distinguish any of us as adult students.
An abrasive tyrant and if you couldn’t keep up, tough luck!
This particular oppressor did not know her own privilege and she exerted it all over me, as if she was deliberately and provocatively dancing around me, forcing me to feel her neurotypical privilege, flaunting it.
Understandably due to this I could not grasp it and certainly could not keep up, with no study buddies and when asking for extra support I was met with a simple – no!
Desperately I sought out the advice of my personal tutor, explaining what had happened and that if given a level playing field I could do better, but he told me maybe it would be more suitable for me, if on another course.
With not much choice and being shoved out of journalism like an unwanted bag of rubbish I swapped to doing a degree in Spanish/Arabic and International Relations.
As a bilingual in French/English, spanish would not be too hard, and it wasn’t.
However International relations is where everything fell apart; as for the subject, distinction after distinction for my assignments was my average, however one day one of our lecture halls was filled with around 300 students, my anxiety came up into my mouth and after scurrying around and finding a seat at the back I sat there sweating, alone.
We were asked to form groups and that our next assignment would be a presentation. Of course having no friends and knowing there would be a “odd ones out” group, which the lecturer had to physically push a bunch of us together in; the undesirable leftovers.
Being the eldest you may think there would be an advantage, as the rest were kids, nonetheless they were even more socially inept than myself and clueless about the world. We didn’t speak one word to one another.
Nonetheless eager to not fail again, my only option was to visit my new tutor that week and explained that the presentation was something which my illnesses did not allow me to do without me becoming very unwell.
The usual story proceeded, “you are being difficult Charlotte” and being told to persevere. Following this my detachment kicked in like a superpower to protect me, becoming more and more dissociated . No longer able to go to the big lectures, no more fighting for my rights, soon it felt like the university was digesting me whole, ready to evacuate me from its bowels at any given moment. Which was exactly what happened – I was called into to see one of the head tutors, naively thinking that they were going to put some things in place for me to better my student experience and chances.
Instead, a stern, unempathetic woman stood before me, who told me that my illnesses were too severe for the university to accommodate and the only option left was for me to leave the university and come back when I was better… Better??
This made me regress almost instantly to “bad child – crazy girl” becoming very angry and emotional, crying and shouting, the tutor looked scared and hesitantly told me how to complain if I disagreed – but for now in no uncertain terms – I was off the course.
Pleading with her, “there is no cure for my illnesses”, that this was something which is a chronic condition, complex and lifelong. In a frantic panic I went to see the university therapist, hoping that a trained professional would be able to help me and possibly convince the tutors they were wrong, in hindsight maybe this was not my smartest move. Crying like a child I stormed in – saying to the therapist that this was unacceptable treatment of the mentally ill and more detrimental to my health in the long run.
The therapist said my behaviour was erratic, highly emotional and threatening and due to this agreed with the university and said ” it is best you leave Charlotte, as there is nothing we can do for you here, you are too ill”.
As I walked out of the building my body felt weightless like a ghost, plans begun in the back of my mind on how I would kill myself that week, yet again the world had ejected me and given me no choice, possibly a sign of some sort, that there was no point to me.
However instead of taking my own life, a breakdown ensued which made me self medicate, eradicating reality was the only way to stop the pain and stay with my husband, the idea of being without him – alone in emptiness was far to much of a risk. Purgatory was a familiar place, like returning home.
Then after 5 months and being patched up with sticky tape and glue, my need to achieve a degree came back.
This time deciding to approach The Open University, as I had been told this would be more suitable for me, as a completely housebound individual – unable to leave the house on my own or be taken to a university and left to fend for myself until home time, home study seemed a perfect fit.
To my delight the OU had a degree course in philosophy and psychology, a part time, six year course for a BA (Hons) degree.
My first year flew by, confidence had returned.
By year two the OU had me registered as a disabled student and had a whole load of support offered to me. Everything was going great until we got to exams, which for 3 years the OU had failed to set up home exams overseen by an invigilator; this was finally sorted in my 4th year and helped me grately.
In 2014/15, year 5 – on my last psychology level 3 module, the game changed once again and experienced a very cruel tutor who decided my illness and personality were too difficult and just stopped offering me support, contrary to the guidelines set out, she even stopped answering my emails and queries regarding assignments.
You see the OU is done online, however we have tutorials in person at least once a month, online forum discussions and day schools, none of which I can access due to my disabilities, so once again a disadvantage, but add to this a tutor who decided they would go all incommunicado on me, I was left with no way of doing my degree.
After months of arguments and back and forth emails (as I can’t use the phone) finally someone understood the severity and that this was not a case of being difficult. The OU assigned a new tutor, however no extenuating circumstances were considered in my first 3 assignments which were done with no support whatsoever. One assignment the tutor had given me such a low grade due to the fact she believed my illness was too severe to be on the course and told me that my understanding was below the OU’s standard; stating my work was suddenly below level one standards, something of which the OU disagreed with, but it was a non substitutional assignment so apparently they could not change the mark?
This brought my whole grade average down below a pass by 2 points.
One assignment which was incorrectly marked due to prejudice and neurotypical privilege, as well as a totally disregard to the support plan set out before the tutor – I was given a 30% when all my other level 3 assignments were in the high 70% mark.
This was a disaster and led me to think of a new direction, deciding to finish my honours degree off by changing my two focuses, from majoring in philosophy and psychology, changing it to a minor in psychology and major in philosophy and creative writing; adding a year on to my studies.
Bringing us to now, my first year of my new course; creative writing.
And yet again my studies are subjected to neurotypical privilege and that “bad child – crazy girl” label and persona has reared her ugly head again.
Every time I explain to my current tutor about the neurological disorders which are my disability and that due to this am not able to access all of the course due to not being able to attend, he simply says “please fill out an extenuating circumstances form” or says ” I have to treat all students the same”. This led to me having a breakdown last week and to me writing an emotionally charged email to my tutor and student support.
My tutor just reiterated the same autopilot response.
However the student support team for the first time, got it!
The passages which made me feel validated and indicated real progress were these:
I am sorry that your experience of the OU has been frustrating at times. It is a tribute to your determination and academic ability that you have achieved so much despite your conditions and the neurotypical privilege that is present in all walks of life.
This should also give the tutor greater direction as to what they need to be able to do to help you study on a level playing field.
Finally some recognition for my struggles, some validation for the fact I am neurodiverse in a neurotypical world. This is of course not the end, but the fight which has been mine and so many others is finally getting somewhere.
A new awakening is happening and I sure as hell am ready to wake everyone up, no more being silent or being marginalised.
This mission is clear and as hard as it will be, there is no going back because giving me a voice is something “bad child – crazy girl” never had.
If you have any questions on this topic or about my journey, please fill in this contact form:
Waking up from the intensity of nightmares and night-terrors, feels a though you have been battered black and blue emotionally and physically. The hell of thinking within your unconscious dream state that you are trapped in this dystopian creation of your own afflicted mind, causes you to wake screaming, as if you were grappling through time and space to re enter this realm of existence.
Then you wake; the truth hits you like a tyrannical fist, you try to unpick the mess of your insensible and sensible self which is tangled like forgotten jewelry left in a drawer. You lay there trying to regain some control over your faculties, you are still and lifeless – almost catatonic. The world as we know it has not been brought into focus yet, it is still a distant memory.
Hours go by and you’re still unable to move, your mind is working so hard at the puzzle that is your trauma. At this point what is real and not – is completely interlinked; woven together like a tapestry of war.
Finally you feel able to move, the world has invited you in and you feel, you can find your way there. You stick to muscle memory tasks, such as getting dressed, making a tea and sitting at your desk.
Unfortunately, your mind does not always recognise your consciousness in reality and “the real world”, so it flickers from flashbacks to memories of nightmares, interchanging as if someone had a remote control to your brain and was flicking through the channels of your life.
This has been my life for as long as I can remember; however it has grown darker again and is still growing with ferocity. Since becoming older and now in my 30’s, the space in my mind seems to be at capacity, which means when one cupboard or box is opened in my mind – things are now having to be squeezed tighter or rearranged, which in turn causes mess and a lack of new space for new experiences, emotions and eventually memories. Leaving me stuck in a hoarders prison – internally locked in. It is not that I wish to keep these memories or thoughts it is just they need to be processed, labeled and filed away.
Which is difficult when they are buried under years of self preservation.
Reliving trauma in therapy is my only solution, other than self destruction – which is ever so appealing. The temptation of setting fire to the mess that is my internal world seems enticing, a cathartic “fuck you” to the pain. Nevertheless my intentions are to stay in this mind until my husband dies ( which will hopefully be both of us in old age) as the thought of being without him is even more devastating than anything I have ever thought possible. This life is short as I have seen many times over, I promised myself I would spend this time understanding these illnesses which plague me day in and day out, as well as helping others who walk this tightrope of madness and sadness.
We will never forget what was done to us – you see. These abusers, predators and enablers, they caused so much of this. With their torture, subjectification, voyeurism, rape, incest, emotional battery and manipulation. Which begs me to ask, what do they carry with them after the fact? The best you can hope for is guilt; but this is not enough, this is not representative of what we suffer, the victims! They want pity, and sympathy for their affliction, which plays into further domination.
Reliving is a daily task, it does not end when I leave the therapy room, it does not silence the sounds of purgatory. It is in fact something those of us who have complex post traumatic stress disorder have been doing everyday and everynight since we were young.
My mind has been replaying reels of trauma – with added horror, as if my psyche wished to add special effects to my already terrifying past. Despite this, upon committing to reliving in a long term therapeutic setting and being at capacity – in my minds storage capabilities, the intensity rises further causing me to experience psychosis and physical pain.
This process is long and will be a continued managed activity of will power and a determination to use this experience as a way to contribute to the world. The idea is to turn myself, the victim into a survivor and then a thriver. These will never be whole states of mind, and knowing there will be bad days and good days and even relapses, but using the trauma to thrive even for 10 minutes is something worth committing to.
“It’s often said that a traumatic experience early in life marks a person forever, pulls her out of line, saying, “Stay there. Don’t move.”
― Jeffrey Eugenides
Recovery is not a time period set out, it is a continued process until death. When I say I am in recovery, do not be confused and think “that’s good she will be recovered soon” this is not how it works. Recovery is about a continued focus and is an exhausting task to undertake daily, which means there will be days I can not do it or days when triggering events or stressful life experiences put the mind back into those frightful moments which we tried so hard to keep organised and tidy.
Let me ask you?
How do you recover from being sexually abused as a child?
How do you recover from sexual violence, rape, assault, stalking and being beaten as a teenager?
How do you recover from having two parents (who are severely mentally ill themselves) one abused you, abandoned you and does not love you at all, to the other who didn’t love you at birth and couldn’t attach to you and who emotionally abused you, kept leaving you with different people and whose constant fragility due to their illness consumed your life?
You don’t recover…
You hopefully survive and then spend your life recovering.
So this is me and where I am, I know I am not alone, I know you are suffering too out there, I know it is hard and you’re ready to quit! But I want you to know that you are not alone and that you need to take this slowly and realistically. Do not allow pressure from others and society; which make you conform. They do not have to live your life, you know the truth.
Living is hard.
But reliving is harder.
For a bit of history on the practices of therapy in regards to PTSD AND C-PTSD, please read on…
Since the re-emergence of recognition of severe trauma on human development and psychopathology in adults in the 1970s, Chu and Bowman observed there had been three generations of trauma treatment theory. The first generation of research and response began in the early 1980s and emphasized abreaction of traumatic experience in treatment. Abreaction originated from psychoanalytic traditions and describes the processes of acting out and expressing unconscious conflicts that, in itself, brings relief.
I have been in the mental health system since I was 12 and I have had many issues with malpractice, abusive care, neglect and unprofessional dangerous physicians treat me.
I have been told a few times and only just recently there is nothing they can do for me anymore, I am too severe and complex?
I have not been out alone for over 9 years and am housebound most days, I have no earning possibilities (however I am an artist and I run a non-profit with the help of others – this keeps me having a purpose) I have no family and my husband is left caring for me and is on minimum wage, I have no benefits as I can’t use the phone due to my illnesses (paranoia of being bugged) so can not get the forms, the forms hurt my brain so even if I had them I can’t fill them out without support.
I also have diabetes, chronic erythema nodosum and PCOS, which due to my mental illnesses I can not access any care for these. I can’t go to the surgery on my own when my husband is at work, it is closed by the time he returns, sometimes I wouldn’t be able to go at all I as I can’t always go outside, once a week is normally what I achieve but a lot of planning goes into this. And was told by my GP that I can not get home care as mental illness is not considered within this context. So I am left to die. No bloods being taken, no diabetic checks, no check ups on my chronic erythema nodosum which is getting worse, no care or rights for my PCOS so no care of rights for my fertility.
I am at home trying to survive hourly, I do not know how much longer we can live like this?
I am a very strong person, as I have had to be, but really I am not at all. Everyday I fight for mental health rights, so that I may one day be able to change this for me and others like me, which there are so many!!
I am asking your for help? I need you to help me get my voice heard so that I do not lose my battle, so that my husband does not have to carry this on his shoulders alone, so that all the people I have spoken to who are in my situation are heard.
We have no rights, neurotypical privilege is everywhere, we can’t survive without your help.
I have been struggling since I was an infant, I am a survivor of child sexual abuse, sexual violence as a teenager and sexual assault (which was in an adolescent unit) and both my parents have severe mental illness too, who I do not speak to due to their emotional and physical abuse, Mother with Bipolar 1 with mixed states and BPD and a Father with alcoholism and then alcohol induced psychosis, they have been in and out of psychiatric hospitals when I was a child. I was even left alone at 12 for many months whilst my mother was in a psychiatric ward, that was due to the fact she went private so social services were not alerted.
Please read this blog post and please let me know if I can share my story further? Maybe someone will help me? Maybe I will be able to live a better life or more managed life? Help me have the same rights as others!
Why is Severe Mental Illness left untreated in the NHS Mental Health Services:
The mental health system in the UK which is provided by the NHS is failing people like me everyday; so lets see why?
Here is what the NHS have to say about accessing mental health services in the UK:
Mental health, emotional wellbeing and resilience is all about how we cope with what life throws at us. It concerns the way we feel about ourselves, conduct relationships, handle stress or deal with loss.
Good mental health and resilience are fundamental to good physical health, relationships, education and work, as well as being key to achieving our potential.
This is just an opening statement on the NHS website and already there are many issues:
The first sentence implies that mental illness is only from environmental factors around us such as “what life throws at us” and completely negates to say that mental illness can also be a neurological condition which is visible to us on MRI scans. So for people like myself who have C-PTSD, BPD and suffer from periods of psychosis or someone who has schizophrenia, bipolar-disorder, dissociative disorders and many more are left already feeling like this does not include us.
It goes on to say, that in order to maintain a good life: mental health, emotional wellbeing and resilience are paramount. When someone like me sees this, the complete lack of effort to include severe mental illness appears as if the NHS caters to an exclusive group which myself and others are not welcome in. Some mental illness is not “fixable” in that there is no cure and the assumption and misinformation is irresponsible and suggests that those with mental illness can be healed with a one size fits all solution.
For us with severe mental illness the world is very different , we do not have the privilege of those who suffer from situational depression and anxiety solely. The world expects and allows us as people to feel depressed after death, or anxious after a car crash and what ever else “life throws at you”. This was not always the way, society has come leaps and bounds in the last 30 years to accept depression and anxiety in a mainstream way. This help is now widely available to the general public and society is more and more open to those who suffer from depression and anxiety as most people have had it or know someone who has. With celebrity faces, depictions in modern film, TV and literature as well as many charities and campaigns continuously running to educate the world about depression and anxiety, the world is still silent about those like myself still viewed as “crazy” or “psychotic”. Due to complex sever mental illness which are still only referenced in horror films, crime dramas, documentaries about “the criminally insane” murderers, news reports where “someone with a personality disorder has killed someone” or referenced as the go to insults for people displaying “weird” behaviours.
The NHS go on to say:
Less common conditions, such as psychosis, can make you experience changes in thinking and perception severe enough to significantly alter your experience of reality. These conditions include schizophrenia and affective psychosis, such as bipolar disorder, and can have the same lifelong impact as any long-term physical condition.
The issue here is that even within the severe mental illnesses there are some which will be focused on above so many others. With an over emphasis on Bipolar disorder, schizophrenia and a general reference to psychosis. There is no mention of the most common of these disorders; C-PTSD or PTSD, there is no mention of personality disorders, dissociative disorders or to the disorders which have psychosis as a symptom. It is as if the world is not prepared to let go of the label “crazy” and still needs some of us to be under this stigmatising label so that we can be scapegoated as the deranged creatures of nightmares so that fingers can be pointed and there is a face to the monster.
This next paragraph from the NHS is misleading:
Mental illness is treatable and, with appropriate support and treatment, people do recover. Many move on with their lives and are able to care for their family, contribute to the local community, and get back into employment or training.
The sweeping statement that “mental illness is treatable” is an insult to many, it should instead read ” some mental illness can be treatable and severe mental illness is manageable with continued support and treatment”. This goes back to the generalised view that depression and anxiety are the only illnesses affecting the masses and that people can only have mental illness which is subject to your own psychological resilience.
Also some with severe mental illness like myself have symptoms from our illnesses which are depression and anxiety, so you will be offered in the NHS to have these treated rather than the severe illness which caused the symptoms of depression and anxiety. for example, I have C-PTSD, BPD and psychotic depression and due to these severe illnesses I have other illnesses which are symptoms of these, such as: GAD, agoraphobia, OCD, Adult ADHD and BDD.
And then lastly the NHS tell you what is needed but only provide one option in reality:
But this may not always be a straightforward journey. Many people only need a short course of psychological therapy or six months of medication, while others will need much more support and intensive treatment, be it medication or extended therapy.
The issue with this paragraph is again how the less complex and severe your illness is the more you are taken care of. Most people will only need a short course of medication and some focused counselling like 6 weeks of CBT if they suffer from anxiety and depression if caused by general life’s ups and downs, they may then need this again and it will be available to them throughout their lives.
However when it brushes us “the complex cases” under the carpet with the statement “while others will need much more support and treatment” this makes me very angry. As they imply they “the NHS” will provide this for us, but in fact this is NOT the case as all. You will be offered drug treatment of archaic psychotropic drugs, you will be offered short term therapy (6 weeks) and then once you have had this treatment you can not re-apply for treatment until after 6 months. So if you are not “cured” after 6 weeks, tough luck! Which as you have read is impossible for complex and severe mental illnesses.
There is no after care, the emergency lines (crisis support) they allow you to have whilst in treatment are then closed to you, (not that they answered when you were allowed to call them). Finally the pièce de résistance is that you will be told (like I have been told 3 times over the last 21 years) with no uncertain terms that “there is nothing we (the NHS) can do for you now, sorry”.
The devastation that is felt by people like me, who are unable to be part of society due to our mental illnesses due the stigma attached to us, is so overwhelming that in most cases it leads to a relapse and more often than not self-injury, suicide attempts or death. When this last happened to me last year, I suffered a further breakdown and relapse, this meant I did not take care of myself for over 6 months resulting in more ill health. If I did not have a husband who takes care of me when ill, I would have died. So what about all of those alone? What about my husband who has to deal with this on his own?
Now I ask you, is the mental health system working effectively?
Next time I shall be sharing my timeline of treatment within the NHS from age eleven to now. So follow my blog to keep up to date on my future posts.
My colleague from ART SAVES LIVES INTERNATIONAL and dear friend Jade Bryant is also exploring the NHS and its failings within the Mental Health System, please follow this link to read more and get involved by sharing your stories.
This is the beginning stages of a campaign which ASLI (our non -profit) will be running in the near future. We hope to elevate our voices and others and then we hope to take this to the government; to bring about change as well as running workshops and programs which will aim to engage better understanding within communities, so that people like myself and Jade and so many others can be included properly in society which will inturn help us with our mental health.
Thank you for your time.
If you have anything to say on this subject, or your own story please get in touch via this contact form: