I have to open myself up again, for the powers that be.
I have to retell it, relive it all.
I have to prove my illnesses and disabilities, whilst fitting in the predetermined boxes – designed for some of us to slip through.
I have fallen through the lines, the pages, told “there is nothing we can do for people like you”.
“You’re too ill”.
Jumping through hoops, running up hills – against the torrential down pour of sociatal expectations.
All this is done whilst the 1%, the bourgeoisie, the privileged watch on, as they stuff their faces with our human rights.
The media uses us as scapegoats, for the ‘outraged’ to demonise us, with the misinformation they are brainwashed by – we, the ones at the “bottom”, we bring it on ourselves.
Illness is equated with laziness, disability is questioned as being unmotivated.
The seen, the unseen and no details in between.
My work is unpaid and thankless, the sick leading the sick.
I don’t want this feeling of being less than, for being unable to fit into an imaginary “type”, conjured up by able, privileged puppet masters, pulling strings, herding the “deserving” humans into their boxes, and the undeserving to their coffins.
Since this letter things started to look up, after tweeting my desperation and crisis live to the world and my followers, the NHS services in my area contacted me and so did the patient liaison services at my GP surgery.
However it has now become clear that my plea for help and my right to basic medical care was in fact interpreted as an invitation for further discrimination and stigmatisation from NHS staff, leaving me defeated, suicidal and so very ill. Ableism reared its ugly head, as did the neurotypical privilege of the service providers. Surprisingly after all I have been through – I was shocked, naive some may say, but when you are desperate – hope is all you have. My hope is almost non existent now.
The main issue seems to be a complete lack of understanding for complex mental illness and disabilities as well as a lack of empathy. I understand that these bureaucrats are not medical professionals, however if they do not have the knowledge – they can get it, and if they are un-empathetic – should they be put in these roles?
Another problematic situation was the abrupt stopping of access to my medication which happened which left me without medication for several months and no doctor at my practice seemed concerned that this had happened due to me not being able to attend a review which they set for my medication, so due to my lack of ability to attend (which they were well aware of) they just stopped it. Now there are not many meds I can take for my mental illnesses, anti-psychotics make me zombie like, mood stabilisers seem to make me physically sick, most anti-depressants do not work for me, however Citalopram is a drug which minimises my anxiety disorders (C-PTSD, Generalised Anxiety Disorder, OCD, Body Dysmorphic Disorder and Agoraphobia) I take the 40g dose which is the highest (when not in hospital) – it takes the intense feelings away, the feelings which cause me to be in constant fight or flight – a hyper vigilant mind, which feels like your entire body is trying to kill you and save you from imagined danger all at once. Even though it is not a miracle cure and does not make me more able, it allows me to exist in a calmer mind set, which is a life line when dealing with complex illnesses.
As you may be aware it is dangerous to stop medication abruptly as it can cause side effects and withdrawal symptoms. Personally my withdrawal was hell and life threatening, some are lucky enough to not even experience any issues, however there is no way of knowing.
The danger I was put in by the doctors stopping my medication access abruptly led to: suicidal thoughts and plans, anxiety, panic attacks, brain fog, concentration problems, insomnia, migraines, confusion, depression, dizziness, nausea, mood swings, fatigue and irritability.
This then had a knock on effect to my other illnesses, being under so much stress led to my diabetes and PCOS symptoms to become worse, my borderline personality disorder became more intense and more dangerous for me, intensifying my suicidal desires and my inability to regulate emotions. Also I experienced psychosis – with delusions and hallucinations due to my psychotic depression.
The ridiculousness of this is once I started to complain on social media, the doctors were made to give me an emergency prescription of 30 days, but with no accommodations being made for me to access my GP and as this is not on a repeat prescription in exactly 15 days time I shall be in the same predicament and have to go through this ordeal again, which I fear I will not survive.
In my correspondence with the NHS several things were said to me which constitute as discrimination, ableism and some were just unhelpful in a stressful situation.
Some of the most frustrating things said to me:
“it is a shame your husband can not attend evening appointments”.
Well as far as I am aware just from all the people I know in this country, none of them can access evening appointments due to normal working hours, with only one evening being made open for late appointments, this is ridiculous and very unhelpful to me a disabled person – house bound, with only my husband as my access to the world outside.
“you say you are out of medication”
This may be semantics, however saying “you say” indicates a lack of belief, what would be wrong in saying, “you have no medication, we can help with this”, this was very triggering for me and my conditions as it made me feel unheard and disbelieved.
“There are other surgeries which may offer what you need”
This made me feel so angry and discriminated against. As no real effort has been made here for my disabilities. A ramp is put in place for wheelchair users, WHERE IS MY RAMP! If they are suggesting that some one like me is so difficult and must be put through the added stress of finding another GP surgery just because a GP can not message me via email or text when they are on their way to my house, so that I can answer the door to them, well this is disgusting! This is what we are talking about… Nothing more!
“This appointment could have been had by another patient needing a home visit”
Now this is called victim blaming as well as ableism. I made it very clear that my disabilities mean my communication skills are impaired so I can not answer the phone or make phone calls, I also stated that due to my disabilities I can not go outside alone, sometimes not at all, that a handful of people are safe enough for me to go outside with (all of whom work during surgery hours), and that I can not answer the front door if I have no idea who it is (giving me a time or texting when outside is how I can open the door). Saying that another patient could have had the appointment I so desperately need is so discriminatory against my mental illnesses and has put unnecessary stress onto me when already so unwell.
This is why it has taken me 3 weeks to write another article, as I feel defeated. My only motivation is that by fighting for myself I can fight for others, as so many people have messaged me in the last 3 weeks telling me how they are in similar situations, so holding on by a thread my mission is to create change. However when the next wave of withdrawal happens whether this fight is sustained is anyone’s guess. As there are times when I am not in control of myself. For now my fight is waning but still intact.
Here are my email correspondence with the NHS (this is done for full transparency):
For more information on Citalaopram please follow these links:
Brain zaps: Most SSRIs can lead to a person experiencing “brain zaps” or electrical shock sensations upon withdrawal.
Concentration problems: a person may feel mentally slow and/or foggy when they stop the medication – this is likely due to changes in levels of neurotransmitters.
Confusion: Your cognitive functioning can become impaired to the point of experiencing general confusion. This confusion may be a result of memory retrieval problems, but could also just be confused thinking.
Crying spells: Some people report increased depression to the point of crying spells. Low serotonin can cause people to cry excessively.
Depression: This is a result of their brain no longer inhibiting the re-uptake of serotonin to the degree that occurred on the medication.
Dizziness: Feeling dizzy is one of the most common symptoms to experience during SSRI withdrawal.
Fatigue: It may be difficult to get out of bed in the morning or even make it through a work day. The tiredness and lethargy may be pretty severe.
Headaches: This is another classic symptom of SSRI withdrawal.
Irritability: This is because the brain no longer is receiving the calming effect of the drug and it can be difficult to regulate emotions.
Memory problems: It is common to experience memory problems to the point that you think you have lost your memory.
Mood swings: They may persist for a long time, but will eventually subside.
Nausea: You may feel nauseated all day and in some cases, want to vomit.
Sleep changes: It is very likely that your sleep cycle will be affected when you withdraw from this drug.
Suicidal thoughts: It is very common to experience suicidal thoughts when discontinuing an antidepressant. Any SSRI that is withdrawn from is likely to lead a person to feeling suicidal.
If you have experienced anything similar with the NHS or you wish to help me and want to know how? Please fill in this form:
For the past 9 months or so I have been left untreated and unsupported by my GP surgery – which is Baffins Surgery Portsmouth and Solent NHS Trust as well as other departments. I used to have a family member who was able to take me to the many medical appointments a person like myself has, but unfortunately I no longer have this family member in my life and since then have been unable to access any care, appointments and clinics. This is because the NHS does not deem people like myself (mentally ill) to be housebound – even when they have conditions which specifically challenge their freedom to leave the house, to interact with people, to use the phone and lead independent lives. This is discrimination and against my human rights to access care.
I have asked my GP and Solent NHS Trust to help me again and again, it is not until I tweeted them in crisis (I am having a breakdown) that they have responded, and still now they keep offering me appointments which I can not get to.
Due to my conditions (which my surgery is well aware of as I have been in the mental health services since I was 12) I am unable to leave the house on my own (I have not done so for 10 years), a lot of the time I can not leave the house at all, I can not use the phone to call out or receive calls due to my disorders, my husband is my only family and he works during my GP’s surgery hours for appointments and telephone calls. When accompanied outside by a safe person, I can not order my own food, ask strangers for help or cross the road on my own. As well as this I experience sensory overload when outside, loud noises cause me physical pain, I am on high alert and most of the time can only deal with basic communication.
I have been told that people with mental illness can not qualify as being housebound, even though my conditions cause me to be this way, I was told there is nothing that can be done!
I do NOT accept this!
I need the Solent NHS Trust to help me so I can have the same human rights to care as others
I need a support worker to take me to all my medical appointments as well as the need for home visits from my GP for when I am unable to leave the house at all.
Since this happened I have been unable to continue my diabetic treatments, clinics and check ups as my surgery will not do home visits and all blood test clinics are in the morning when my husband is not available. So my diabetes could be getting worse I would have no way of knowing, until too late.
I am also unable to have fertility treatment as I am unable to get the help I need to qualify as I have PCOS and am now infertile.
I have something called chronic erythema nodosum which needs to be checked often to make sure I do not have any other illnesses associated with it.
I have arthritis and it is getting worse I need help as sometimes I can not move due to the sever pain in my ankles, knees and wrists, I now have a walking cane.
As for my mental health, well this is the area I have been failed in since I was first in the adolescent mental health services at 12. I have endured mistreatment from many practitioners, including victim blaming, sexual assault in a psychiatric facility at 15, by two male in patients, I have been told I am “too intelligent” to receive care, “too high functioning” and I have been stigmatised for having borderline personality disorder by many practitioners who have deemed me manipulative or attention seeking, when in fact I was in crisis. I have been left with no help or they have tried to section me, there is no in between. I was put on anti-psychotics at 15 years old and was like a zombie for most of my late teens and early twenties. I have been offered treatments which I can not get to, or things which would cause my other conditions to be triggered. I have had no treatment for my C-PTSD except for a un-completed 6 week session of reliving therapy (as my therapist left) which has left me open and more unwell than before, causing my psychotic depression to flair up and experience psychosis regularly. I was put on anti-anxiety medication as I have so many anxiety disorders and then due to not being able to be seen by a GP, the surgery put my medication up for review even though I could not attend an appointment, which meant my medication was stopped abruptly, giving me side affects to withdrawal – which has left me in constant fight or flight and suicidal. These conditions are chronic and serious and cause me to lead a very limited life.
I only have this energy because I decided to give this one last go – one last fight – before I give up. My husband has to deal with this on his own, he is terrified of what will happen to me, where is his support also?
I have been a victim to so much in my life, I suffered neglect and child abuse, a violent rape at 15, and being sexually assaulted by two male in-patients on separate occasions within the NHS Woodside psychiatric adolescent unit in Epsom in 1999 and these are just the worst events, I have suffered much more. But I survived these ordeals even though I am affected by them every day, especially living with C-PTSD, however I survived, all I ask is the chance to live, to have basic human rights, that the duty of care you have is observed when treating me and that I am not left to die!
I also know I am not alone, there are so many of us that are being failed and left to die, you don’t hear them because they have no voice, I also stand for them as I too have been silenced by this ableism, this marginalisation, this stigma and appalling treatment. The only reason I am able to fight is because I have a platform, so I am screaming as loud as I can with the hope you will hear me and help me, and furthermore with the hope you do not continue this lack of care with others, even though I am sure this will not change anything, maybe it will break the silence.
Someone will be creating a petition for me too, so I shall add this to the post when it is up and running.
I am also writing an official complaint to the NHS.
If you have a similar story to this or have anything you wish to add, I would love to hear from you, please fill in this form:
I am running out of steam, I am using every last bit of energy I have to fight for my life, this is the best I could do and is not a comprehensive detailed reflection of the abuse, stigma and human rights violations I have suffered from the NHS as a whole.
All I ask is you HEAR ME, BELIEVE ME and do this for me, for us.
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: