Proving unseen illness in order to survive.

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.

Halloween and the stigmatisation of mental illness

It is that time of year again – All Hallows’ Eve.

Halloween is upon us and has been all weekend, it is a celebration, a ritual and a chance to party with friends, adorning costumes and different personas for one night. With the nights drawing in and winter fast approaching it reminds us of the dark and in turn the dead.

However Halloween has become a mass capitalised practice, with shops and establishments enticing you with their decorations and latest gimmicks from the beginning of October. Making plans for this one night affair becomes about popularity and with the addition of social media – a costume contest is held with hashtags and a one-upmanship mentality.

Although this is not the scariest thing about Halloween, in fact the most frighting of attitudes and beliefs come out to play during this festivity and that is the representation of mental illness and the mentally ill. With depictions in horror films, on TV and in literature – as well as costumes depicting “psychiatric patients” or the idea of insanity being cool or glamorised.

As some one who has sever psychiatric conditions and who has had these since being a child, my thoughts on this subject are something I wish to be heard on, hoping that listening to someone who is actually mentally ill, who has been hospitalised in genuine Victorian asylum buildings in the UK, as an inpatient on a psychiatric ward, that in hearing me you will understand that my suffering, trauma, illnesses and identity is not something you get to “have fun with”. You don’t get to put it on for the night and then take it off without hearing me tell you that this is causing me and people like me to be demonised, you continue our persecution and discrimination. Whimsically you step into a piece of clothing which represents people who have been killed for their disabilities, locked away and forgotten about due to their illnesses, and tortured or experimented on because they behave and think differently to the perceived average person.

Having been stigmatised and labelled as dangerous to others, as a person who is violent or unstable – a person to be feared, a monster. I myself, have believed these things to be true, having allowed myself to be shamed into submission, thinking that in fact I am a scary, crazy villain. So I hid from it, allowed myself to be silenced, accepted family and friends stigmatising me with their fancy dress and in their language when watching horror films. Listening to people discuss my situation as frightening, something which scares them so much they can’t watch.

In the depictions of mental illness within horror films and on TV sometimes I catch a glimpse of myself, in a girl who is screaming manically and bashing her head against walls, or rocking herself in a corner or strapped down sedated in a hospital bead. I have lived these experiences, I still do sometimes. The rocking myself is a self soothing, allowing me to keep myself safe.

Yes I have done this in the dark, on a psychiatric ward – yes it was scary.

But not for you! For me!

When experiencing psychotic episodes I have smashed my head repeatedly against walls, on tables anywhere I could. As I rarely remember my psychosis or at least only fragments of it, I can not tell you exactly what I was thinking – but I can guess with almost complete certainty that it was to stop the intrusive images, the voices, the flashbacks, the pain… It was not because I was possessed or dangerous to others it was because of my neurological damage due to early childhood trauma. Which again is not scary in the spooky horror sense when explained, it is in fact a medical condition and symptoms.

Being in a psychiatric hospital is not a horror fest or a sensationalised attraction to experience. It is like any other medical facility, it is there to treat people with illnesses in a focused in-patient manner. Yes the Victorian buildings were scary and yes me and my in-patient friends would tell ghost stories and scare ourselves whilst walking through the abandoned buildings and grounds – but we didn’t think we were the monsters, we knew we were thought of this way by the outside world.

(West Park Hospital in Epsom is where I was an in-patient for 6 months in 1999)

However we had seen real horror, most of us having survived childhood molestation, violence, and emotional abuse. We knew we were only really a danger to ourselves, hacking away at our own flesh daily, burning ourselves with lighters, putting ourselves in danger as vulnerable people, not eating, taking substances to excess and attempting to kill ourselves often. We were the scariest thing around – to ourselves, but are we really people to be feared? No – we are people who have been vilified in order to hide the realities of true horror, which happens everyday in plain sight, by people you know, people you forgive and people who you look up to. Our ideas disturb the status quo and our sadness gets in the way of the idealistic idea of living a happy life. We make you uncomfortable – because deep down you know we are not different, that you could become ill or have a breakdown. Your neurology is not bullet-proof. We are not made of weaker stuff.

So I ask you to think about the depiction of mentally ill people at Halloween, I ask you to challenge your thoughts on what we look like, act like, or are capable of. Think of the backstory of a character and realise just how un-scary someones emotional distress, neurological condition or neuro-divergent ideas are in context. Think how you may make someone you know feel – who has mental illness, when you dress up as a deranged “psychopath”. Don’t contribute to this stereotype and the discrimination it allows to continue.

(These images are of graffiti myself and other in patients did in abandoned rooms during our stay at Woodside adolescent unit at West Park Hospital in Epsom, England in the summer of 1999 – during art therapy sessions. These photographs have been taken by people who site these as disturbing images of “crazy”impatient scribbling. I see them and remember letting out our pain, me and my best friend Jenny (who took her own life years later), of us together – expressing ourselves through art, this is NOT a horror movie scene or anything sinister.)

Open Letter: To The Mental Health Services England (NHS)

Dear Mental Health Services England (NHS)

I am writing to you as I have lost the will to fight for my life and am using my last amount of strength to share my desperate situation with you.

I suffer from: complex post traumatic stress disorder, borderline personality disorder, psychotic depression, generalised anxiety disorder, agoraphobia, obsessive compulsive disorder, body dysmorphic disorder, adult attention deficit disorder, diabetes, polycystic ovarian syndrome, arthritis and chronic erythema nodosum.  

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.

 

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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.

“…if you are ill or injured, there will be a national health service there to help; and access to it will be based on need and need alone – not on your ability to pay, or on who your GP happens to be or on where you live.” – The New NHS: Modern, Dependable – Government White Paper, December 1997.

“If the right to health is considered as a fundamental human right, significant differences in access to health care and the health status of individuals must be seen as violations of the principle of equality” – Implications of a Right to Health – Virginia A. Leary, 1993.

For more information: The Human Rights Act 1998 and Access to NHS Treatments and Services: A Practical Guide


HERE IS HOW YOU CAN HELP ME!

  • Firstly share this open letter with anyone and everyone.
  • I need the Solent NHS Trust to help me so I can have the same human rights to care as others. So here is what I need – send them this open letter:
  • Or email them: communications@solent.nhs.uk
  • 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.
Thank you xxxxx

 

Charlotte Farhan - Open letter to NHS