Our Journey so Far – Me and my Psychiatric Assistance Dog

 

This is our journey so far…

Amadeus is a 13 month old standard poodle who is my psychiatric assistance dog and he is helping me gain some independence, access to the outside world, exercise and he also gives me things I can not get from human interaction. The conditions and illnesses which Amadeus aids me with are Complex Post Traumatic Stress Disorder, Agoraphobia, Generalised Anxiety Disorder, Borderline Personality Disorder, Psychotic Depression, Obsessive Compulsive Disorder, and Autistic Spectrum Disorder.

The requirement for me to have an assistance dog was in fact my last hope in having a more fulfilled life, in this able focused and neuro-typical world. Due to sever mental illnesses I have been unable to lead a “normal” life for over 11 years and some things have never been achievable.

When using the word “normal”, I use it in the sense that many things achieved by able people are taken for granted, such as being able to leave your home with ease everyday, crossing roads, being outside independently, going into shops and other establishments, speaking to strangers or service people, taking public transport, being able to drive, listening to music on headphones, meeting friends, going to hospital/doctor appointments…

the list goes on…

Very kindly a close friend of mine started a GoFundMe page and raised enough money for me to get Amadeus and all the things we needed to get the show on the road. People from all over the world donated and before I knew it, we were taking Amadeus home and the rest is history.

So in under a year I have achieved a great deal with Amadeus; starting with simply stepping outside my front door with him and closing the doors behind us whilst no one else was home – this was my first and most challenging of exercises.

Then we walked up the road and started with the closest cul-de-sac, completing this for up to two weeks at a time, then moving onto the next. Eventually mastering  three and staying in this comfort zone until I was ready to go past a busy pub and cross a small road by a large cul-de-sac. By this point I genuinely was astonished by my progress and felt a sense of freedom which would make me promise myself to never let go or go back – a lot of pressure but I have no “happy” medium abilities, it is black and white or nothing.

After this achievement my sights were set on going further up our road to a small green in front of an old Victorian prison, knowing this would be ideal for Amadeus to do his business and for me to be near some kind of nature – with trees and grass (even though it is next to a main road and very busy roundabout). This feat was very challenging, managing to do this once a week and slowly progressing to be able to do it more regularly over several weeks, before committing this as the place we would walk everyday.

By this point Amadeus was getting to be almost one and a feeling of rebirth flowed through my veins. So one day impulsively I decided to go the other way from my front gate, up the road and over a busy bridge to the cemetery behind my house, as this was something I could do without crossing any main roads  – plus it would give me an abundance of nature, things to look at and a longer walk for Amadeus.

We did it!

However this was impulsively done which was me jumping up my ladder and not safely stepping up one rung at a time, which is a trait due to my Borderline Personality Disorder (BPD). This meant I was wiped out for almost two weeks due to the exhaustion of doing something so outside of my comfort zone, which of course made me have sever anxiety symptoms – even though at the time it was enjoyable, but when you get the same adrenaline from walking up the road to a cemetery as someone bungy jumping or sky diving – it can be a really surreal feeling.

My next challenge is crossing a main road in front of my house which luckily has a pedestrian crossing and then walking straight down small residential roads to a beautiful pond and recreational field. My plan is to try and achieve this, this summer, which will be my greatest achievement so far. Amadeus will be able to go off lead in the field, we can walk around the pond, watch the wildlife, sit and read or listen to music; it is something I dream about constantly.

Even though this has changed my life, there are still days I can not go out, there are days when being outside is like being assaulted by every piece of sensory information at once, leaving me unable to process details and all I can do is rest and recover.

So if you have never thought of how privileged you are to leave your home in a carefree manner and when interacting with the outside world and its tasks it is no big deal to you; then I challenge you to think of what your life would be like if you were unable to do these things?

 


As a small art project I documented my journey so far with Amadeus and distorted the images to show the different sensory issues I encounter when outside. This was challenging as simply taking the photos by busy roads was disorientating, however with Amadeus keeping me grounded and helping me feel present and real I was able to do a lot more than I thought I would. There is a slide show, all images underneath and some videos.

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Ableism and Fertility – When online support groups turn against the vulnerable

Last Friday I woke up in my usual state of anxiety and dissociation, having spent what seemed like a life time of nightmares that night – when I had finally focused my mind on the day ahead my heart felt heavy and my mind was attentive to the fact I am infertile due to many factors and can not receive fertility treatment or adopt. The root of my issue is that I suffer from polycystic ovarian syndrome (PCOS), which developed in my early twenties after battling with anorexia and bulimia chronically for 8 years resulting in hospital treatment, ignoring my diagnosis due to embarrassment – as it made me feel a lack of control over my body my condition worsened. Having battled (and still battling) disorder eating and withholding food this news made me feel “fat and lazy” especially upon reading the information available on my illness – the stigma associated with PCOS is shocking, the symptoms of high testosterone in my body made me feel embarrassed as I started to grow unwanted hair – my self esteem was already in tatters so this was the last straw. Due to ignoring this diagnosis I developed type 2 diabetes just before I turned 30 and then my life as a woman trying to conceive changed forever.

Whilst feeling severely depressed and alone at the end of last week,  I turned (like many people) to a support group on Facebook called PCOS Tribe UK which having been a member for a while even though I had never posted, seemed a great place to find some support, so whilst shaking with adrenaline and seeing lights flickering over my eyes I wrote a post:

 

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I understand this was a very vague post, but not knowing how or what to say this felt like a way to open the conversation up as I was feeling so unable in myself and struggling with communication. Within seconds I received a reply and was hopeful that it would lead to some support and empathy with people who were also experiencing these difficult things. At first all seemed good I received this:

(For the privacy of these women I have made their identities unknown – as this is a private group and I would not wish their personal medical circumstances to be displayed without their consent.)

 

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Upon receiving this initial comment I felt a sense of relief that a dialogue had opened up with someone on this subject, also very much appreciating the:

“but maybe your circumstances are different than mine”

This felt like my opportunity to explain my situation further. Before I could even contemplate what to write the sound of notifications rang in my ears as my phone received new replies and comments on my post. Quickly my relief turned into more anxiety and my mind started to fog, the lights got brighter and my body and mind were sending me clear signals that I was under attack, so the defences went up.

 

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The first reply here is patronising and assumes they know my circumstances before I have even had a chance to explain and as I am sure you can read, her sweeping of my differing circumstances under the rug is in fact very silencing. Assuming we have been through the same thing is also a very big mistake when discussing these issues – I appreciate what she was possibly trying to do, but it was misjudged, so whilst trying to find a way to eloquently reply, of course the other lady was still being very kind and empathetic, which made me continue:

 

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On another screen on my phone I was desperately trying to write a reply which stated the reasons to which personally conceiving a baby is just not in my future, wanting to explain why fertility treatment has been denied to me on the NHS and why adoption is impossible when you have sever psychiatric disorders and physical disabilities, but the notifications kept coming and my anxiety as well as impulse control was pushing at my temples, making me feel obsessive and compulsive with rapid thoughts misfiring, it was painful physically as well as emotionally overpowering.

 

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As you can see my response is short and frustrated, it may have come across rude, but I have not got the same social abilities as “neurotypical” people, so direct is how I communicate especially when under pressure. The women were of course still trying to be helpful and there is no doubt in my mind that they were offering this advice in kindness. However so much of this is misguided, privileged and ableist as well as factually incorrect. Women kept stating to me that the ONLY way you could be certain you were completely unable to conceive is if all your female reproductive organs had been removed? This of course is not at all correct as there are many reasons why a woman can not conceive from physical illnesses as well as socio-economic reasons. Also as a woman who can’t have children it is never helpful to have other women push their success and fertility down your throat when they have not afforded you the time and courtesy to explain exactly why your inability to have children is a fact.

 

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(the reason that my image and name is blanked out is because these were taken on the group (PCOS Tribe UK) owner’s phone/computer and were put up on her Facebook profile – which I saved as I was removed from the group before I got to screen shot everything, may I add this is the only one she blanked my name and picture from, all the rest disclosed who I was in a public setting disclosing my infertility and medical issues)

This particular screen shot and comment of me hurt and made me feel mocked and dismissed. Apparently it was only acceptable of me to take advice on trying to conceive, NOT acceptable however to seek help in accepting that I shall not get the chance to have children due to my health and circumstances. Is it so wrong to have tried everything in your capabilities to conceive and seek help but still be denied or unsuccessful and then seek help in the acceptance of this? The only reason I came to the group was to seek help from women who for whatever reason could not have children – never thinking that I would be shamed for seeking this. It felt like for this woman, me seeking acceptance and help with this was an attack on her or the “wrong” thing to do as a woman.

My responses were apparently not acceptable and deemed abusive. But it was acceptable to suggest to me that I ask a friend who may wish to have an abortion if she would carry her child fall term for me to adopt?

The bombardment continued:

 

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I was abrupt – yes! But rude – no, you can see I am trying to explain myself and my disabilities but it is going so fast. Still desperately writing my explanation on another screen hoping that when these women understand my position they will know I was not being rude. By now the tears have begun to fall and my mind is experiencing tunnel vision.

Then the lady who replied to me first – who was kind and empathetic posted a comment, unfortunately I wasn’t able to send my reply as the admin had stopped all comments, as you can see from the red alert. I wanted to thank this lady for her kindness. And was still trying to reply to her first comment and explain myself.:

 

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Desperately I said several times on peoples replies “I am neuro-divegent” or “I have neurological damage I can’t process information that quickly”, hoping this would alert admins to my situation, hoping for some assistance but unfortunately I got this final reply from an admin and then was removed from the group:

 

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The decision and action taken by the groups owner and admins, was so upsetting, in disbelief of my removal I started a new explanation and wanted to post it on the groups wall to explain myself in the hope admin would see their error of silencing a woman just seeking support who couldn’t keep up and explain themselves in time due to their neurodiversity and disabilities. The other issue which caused me great distress is the fact the admins saw me pleading in regards to my disabilities and my inability to process this information and communicate at the speed neuro-typical people do. That instead of making this group and support accessible to me they deemed me a trouble maker who had only come to this group to cause arguments? Which may I add is an odd conclusion to make so abruptly and without hearing me out – however as a person who suffers from mental illness I am used to this kind of stigma. So I screen shot the reply I was trying to write which is when Facebook told me I was not able to post in the group anymore (hence why it is faded):

 

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But this was never seen and that was it I was banished. Left crying and feeling even more alone – like a freak, a troublemaker. Seeking some help as I was feeling very vulnerable and out of control and as someone who can not leave the house most of the time – panic set in and the fear of having a psychotic episode which could lead me to hurt myself was terrifying. Whilst trying to focus I reached out to my FB friends, family and followers as they are such wonderful supportive allies and know my situation, I wrote this:

 

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As soon as this status went public I started to receive friend requests and message requests from several different women, naively I thought they were sending me these requests to support me after what had happened. Unfortunately I was mistaken, the owner of the group was the first and as soon as I accepted her friend request she commented on my status:

(As this is a public post and this woman “Jane Mann” wrote this on my public post on my public profile no ones identity has been blanked out.)

 

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As you can read “Jane Mann” still misses the point entirely and still thinks it is acceptable to treat me this way and wishes to silence me further, and does not accept any criticism of her group. As this is on my profile my friends, family and followers become very protective of me and help tell Jane to back off. I then block Jane.

More women sent me (and anyone who commented on my status) abuse and friend requests, after this one of my friends sends Jane a message telling her in no uncertain terms to leave me alone – I did not ask for this to be done (although very grateful) however I do not know what Jane Mann expected when she made herself public on my profile.

Then the messages begun – I did not accept most of the requests however I did with this lady:

 

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As you can read she is very angry with me and my situation. This woman thinks I should be able to disclose my disabilities up front with no issue and if not – then that is my fault, which is of course a very able privileged view point. Also stating that because I had not posted before that this meant I was suspicious? She also questions if this (wanting to conceive and raise children of my own) is actually something I truly want, because I didn’t just shut up and accept advice which was actually not relevant to me as I CAN NOT CONCEIVE, but was never given enough time to explain exactly why this is so! Also she suggests I am a liar because I said these women “attacked” me, but doesn’t understand that feeling attacked by a large number of women overwhelming me with information at an unrealistic speed for me to keep up with is also a valid description of being “attacked” they of course did not pounce on me literally they attacked me figuratively through their ableism and dismissing my disabilities. I felt attacked! This very angry woman also says “if you had posted correctly” then apparently I would have been helped, I was unaware that there was a correct way to post – if I had known I certainly would have not joined the group or posted as this is too restrictive for me and confusing. As stated before – that morning there was no way in which I was able to write a long post explaining every detail of my infertility, physical and mental illnesses, disabilities, neuro-diversity and circumstances, not only because I was unwell but also due to the unwanted stigma that my circumstances can cause. Also her focus is on the number of women, I said “about 15” – for me this included all responses however I may have counted some people twice due to certain people posting more than once, in the confusion this is very possible – a valid argument against me – no!

This got nastier and nastier as this woman messaged everyone who had commented on my status or liked it – harassing people all because of this situation. Then this woman took it upon herself to go to my non-profit /charity organisation FB page Art Saves Lives International (ASLI) and do this:

 

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(since this attack either the woman or Facebook have removed this review)

 

Not only was this a step too far and nothing to do with ASLI as I was never in the group PCOS Tribe UK representing ASLI – I was there as Charlotte Farhan. This went on and on and she disclosed my infertility and medical issues here on this page. Not my public profile which anyone can access – not my public art page on Facebook which is just me. No this woman attacked this page and gave a fake review of an organisation which she had never heard of, all because I was unable to explain my disabilities and circumstances in the PCOS Tribe UK group in a satisfactory and speedily manner in order to receive advice I did not ask for or need by ableist privileged women.

My friend and a member of the ASLI team received a threat of physical harm and her art page on Facebook was attacked by these women:

 

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I received more the next day:

 

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Then my husband was alerted to Jane Mann (the owner of PCOS Tribe UK) sharing my information on her private profile as well as allowing people to discriminate against me and a friend after my mental illnesses and disabilities had been confirmed, this was in an album on her profile named “Evidence” along with screen shots of me in the private group disclosing all my issues:

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Calling us mentally unstable – which myself and my friend who sent Jane Mann a message (no one else did) are, as we have sever mental illness, which we stated – ridiculing us is ableism.

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Calling me a psycho – ableism and stigmatising against my very real and debilitating psychiatric illness.

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Yes we do! We don’t get it due to the state of the mental health care in the UK on the NHS. This is an ableist slur and stating how it is sad we need help is stigmatising and discriminatory.

None of this needed to happen, this was avoidable and hopefully these women – especially the owner and admins will learn how they need to check their privilege, especially their able privilege as well as understanding that fertility is not only to do with your reproductive organs, that there are many women like me who are given a small window until they reach 35 (depending on their area) who if they do not fit the correct criteria are denied fertility treatment. For me due to my 5ft 11inch frame and difficulties getting down to an unrealistic BMI in under 2 years when my diabetes was so out of control due to my  pancreas shutting down – was just not possible. Then the women would say “well get a second opinion, see a fertility specialist, get fertility treatment”, which my husband and I can not afford as we are a one income household as I can not earn money due to my disabilities and we have very bad credit. As for adoption – well I do not meet the standards as my disabilities and mental illness would mean (by their assessment) that I could not adequately care for a child. I do not dispute this as I am unable to care for myself.

Due to these factors my goal now is acceptance and realising that life without children can be fulfilling and meaningful, at the time I realise grieving for what will never be is essential. My husband and I have already lost a pregnancy when i was 26 years old – just after our first scan.

There is no malice in this article just awareness and my experience being put forward, hoping that this will mean other women like me will not be silenced or shut out because they do not fit into the socially constructed ideal of being a woman and having children. I would like to thank the women who came forward to me from the group PCOS Tribe UK who offered me support and help even though they were scared of the group owner and admin removing them, there were 5 women but two wrote sensitive information which may disclose their identities so I chose not to put them here:

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*Revision – I would like to clarify that I do NOT deem all members of this group as ableist, privileged or patronising. I am only referring to the members I had experiences with which were ableist and privileged. I am certain that this group is full of wonderful women from all different perspectives and circumstances, my issue is only with the page owner, admins and the members who attacked me after being removed. I know most women who commented meant well and did not understand my situation due to my vague post. I have not written this article to detract from the “good work” this group does for other vulnerable women, but felt it essential to put my experience across and since doing so have received a lot of feedback from women within the group and out of the group who have experienced similar issues in regards to my experiences and who have also experienced ableism. I wish all these women the best and hope they have happy healthy lives (even the owner, admins and members who harassed me after being removed). I hold no hate in my heart – I only wish to highlight the issues women like me with disabilities and who are neuro-diverse experience – my voice is valid and I shall not be silenced. 

For anyone reading this who is still unaware or confused about ableism or able privilege then here are some helpful links:

What is Ableism? Five Things About Ableism You Should Know

15 Crazy Examples Of Insanely Ableist Language

Stop Ableism Inc. / Arrêter L’Ableism Inc.

10 Ways to Avoid Everyday Ableism

DISABLED WOMEN AND REPRODUCTIVE JUSTICE

Women and Girls with Disabilities

 

Thank you and if you have any comments of feedback please fill out this form:

Piers Morgan tries to erase survivors of rape by denying our suffering

Piers Morgan who is a rent a gob for the Daily Fail newspaper has taken to twitter over the weekend to comment on Lady Gaga’s rape and her suffering of PTSD. In his comments he suggests that as Lady Gaga is a celebrity that her claim of rape and mental illness is a ploy to gain fans and further her brand. Further more Piers has said that he believes it is an illness which only military veterans can experience.

You would be forgiven for thinking (if unaware of this man) that this maybe someone who suffers from PTSD or who has been raped or possibly that they have a medical degree specialising in neurology or psychiatry. However your assumption would be wrong, this man has NO authority on these matters, he is just a hypocrite who ironically has done the very thing he criticises others of doing. He uses his platform to be controversial and his articles are click bate for anyone who wishes to be angry at “the other” in society.

As you may already be aware (if you follow my blog or art) that I suffer from C-PTSD and have done so most of my life, due to sexual abuse in childhood and then being raped at 15 and then a further 2 times being sexually assaulted in a psychiatric hospital by two male patients. I was first diagnosed with PTSD when I was 15 and later with C-PTSD, with this condition you are affected to a degree that life is no longer functional. We have flash backs which rob us of the opportunity to “move on”, night terrors, hallucinations, dissociation. I have sever pain in my genitalia due to the injuries I suffered and the operations I had due to the violent rape, I developed other mental illnesses like anxiety disorders and depersonalization, as well as having sensory disorders and neurological processing problems.

Read my survivor story here: Confronting my own blood – the aftermath of sexual violence

Here are the tweets that Piers Morgan tweeted:

Pierce Morgan victim blames rape survivors

Pierce Morgan victim blames rape survivors

Pierce Morgan victim blames rape survivors

Pierce Morgan victim blames rape survivors

Pierce Morgan victim blames rape survivors

Pierce Morgan victim blames rape survivors

Pierce Morgan victim blames rape survivors

As you can read for yourself these tweets are rife with misogyny, male privilege, and able privilege as well as perpetuating rape culture, victim blaming and creating more stigma for those who speak out about rape, sexual abuse and violence – as well as those with mental illness and/or neurological disorders.

When people such as this man use their platform to spew opinion as fact and relish in controversy it is as usual the most vulnerable who suffer. These people think that “we” the “victims” are getting some kind of glory from our suffering and illnesses, that we wish to be treated as special little “snowflakes” when in fact all we are faced with is shame, blame and being disbelieved. Piers and others like him, sit in their ivory towers, with no real understanding of what marginalised /minority groups have to deal with and just vomit their privilege upon us from great heights.

As someone who is classed as disabled due to my conditions which all stem from my C-PTSD including my neurological damage, I know what it is to have less rights, visibility, opportunity, earning ability, access to healthcare, being thought of as a danger to others etc.

I have learnt that these kinds of people are just as dangerous as the rapists, the abusers, the paedophiles, the gas-lighters, this is because they open you up again, they re-rape you, abuse you, hit you, torture you, with their ignorance, the erasure they cause and the perpetuation of archaic rhetoric which stigmatises and marginalises people. They are the little helpers to these criminals, with their spreading of misinformation and opinion dressed as fact.

Here were my tweets to Piers Morgan:

Charlotte Farhan and Piers Morgan

 

Upon waking this morning after a disturbed nights sleep from anxiety and intrusive thoughts, these tweets which flashed up in my twitter feed, re-tweeted by other survivors I know, it felt like another day I had to fight through, another day I felt shamed and judged – my C-PTSD was triggered and the adrenaline started to mount in my body, gulping down the tears and anger. Then I remembered my only role now is that of my activism, in speaking out against people and ideas like this. To survive everyday is a battle, personally I am very grateful to people like Lady Gaga for speaking out, for making people like me feel heard or at least a little more visible and not the shameful secret which society would like us to remain. As a victim who has survived I know that Piers Morgans comments will have hurt Lady Gaga as they did for me, and “hurt” is an understatement – there is no word to describe how these comments contribute to the silencing of survivors and how they normalise rape culture.

So if like Piers you are confused about what PTSD and C-PTSD is, please read this information below.

Here is a copy of the PTSD Leaflet from the Royal College of Psychiatrists:

Introduction

In our everyday lives, any of us can have an experience that is overwhelming, frightening, and beyond our control. We could find ourselves in a car crash, be the victim of an assault, or see an accident. Police, fire brigade or ambulance workers are more likely to have such experiences – they often have to deal with horrifying scenes. Soldiers may be shot or blown up, and see friends killed or injured.

Most people, in time, get over experiences like this without needing help. In some people, though, traumatic experiences set off a reaction that can last for many months or years. This is called Post-traumatic Stress Disorder, or PTSD for short.

Complex PTSD

People who have repeatedly experienced:
severe neglect or abuse as an adult or as a child
severe repeated violence or abuse as an adult, such as torture or abusive imprisonment
can have a similar set of reactions. This is called ‘complex PTSD’ and is described later on in this leaflet.

How does PTSD start?

PTSD can start after any traumatic event. A traumatic event is one where you see that you are in danger, your life is threatened, or where you see other people dying or being injured. Typical traumatic events would be:
serious accidents
military combat
violent personal assault (sexual assault, physical attack, abuse, robbery, mugging)
being taken hostage
terrorist attack
being a prisoner-of-war
natural or man-made disasters
being diagnosed with a life-threatening illness.
Even hearing about the unexpected injury or violent death of a family member or close friend can start PTSD.

When does PTSD start?

The symptoms of PTSD can start immediately or after a delay of weeks or months, but usually within 6 months of the traumatic event.

What does PTSD feel like?

Many people feel grief-stricken, depressed, anxious, guilty and angry after a traumatic experience. As well as these understandable emotional reactions, there are three main types of symptoms:
1. Flashbacks & nightmares
You find yourself re-living the event, again and again. This can happen both as a ‘flashback’ in the day and as nightmares when you are asleep. These can be so realistic that it feels as though you are living through the experience all over again. You see it in your mind, but may also feel the emotions and physical sensations of what happened – fear, sweating, smells, sounds, pain.
Ordinary things can trigger off flashbacks. For instance, if you had a car crash in the rain, a rainy day might start a flashback.
2. Avoidance & numbing
It can be just too upsetting to re-live your experience over and over again. So you distract yourself. You keep your mind busy by losing yourself in a hobby, working very hard, or spending your time absorbed in crosswords or jigsaw puzzles. You avoid places and people that remind you of the trauma, and try not to talk about it.
You may deal with the pain of your feelings by trying to feel nothing at all – by becoming emotionally numb. You communicate less with other people who then find it hard to live or work with you.
3. Being ‘on guard’
You find that you stay alert all the time, as if you are looking out for danger. You can’t relax. This is called ‘hypervigilance’. You feel anxious and find it hard to sleep. Other people will notice that you are jumpy and irritable.

Other symptoms
muscle aches and pains
diarrhoea
irregular heartbeats
headaches
feelings of panic and fear
depression
drinking too much alcohol
using drugs (including painkillers).
Why are traumatic events so shocking?

They undermine our sense that life is fair, that it is reasonably safe and that we are secure. A traumatic experience makes it very clear that we can die at any time. The symptoms of PTSD are part of a normal reaction to narrowly-avoided death.

Does everyone get PTSD after a traumatic experience?

No. But nearly everyone will have the symptoms of post-traumatic stress for the first month or so. This is because they can help to keep you going, and help you to understand the experience you have been through. This is an ‘acute stress reaction’. Over a few weeks, most people slowly come to terms with what has happened, and their stress symptoms start to disappear.

Not everyone is so lucky. About 1 in 3 people will find that their symptoms just carry on and that they can’t come to terms with what has happened. It is as though the process has got stuck. The symptoms of post-traumatic stress, although normal in themselves, become a problem – or Post-traumatic Stress Disorder – when they go on for too long.

What makes PTSD worse?

The more disturbing the experience, the more likely you are to develop PTSD. The most traumatic events:
are sudden and unexpected
go on for a long time
are when you are trapped and can’t get away
are man-made
cause many deaths
cause mutilation and loss of arms or legs
involve children.
If you continue to be exposed to stress and uncertainty, this will make it difficult or impossible for your PTSD symptoms to improve.

What about ordinary ‘stress’?

Everybody feels stressed from time to time. Unfortunately, the word ‘stress’ is used to mean two rather different things:
our inner sense of worry, feeling tense or feeling burdened
or

the problems in our life that are giving us these feelings. This could be work, relationships, maybe just trying to get by without much money.
Unlike PTSD, these things are with us, day in and day out. They are part of normal, everyday life, but can produce anxiety, depression, tiredness, and headaches. They can also make some physical problems worse, such as stomach ulcers and skin problems. These are certainly troublesome, but they are not the same as PTSD.

Why does PTSD happen?

We don’t know for certain. There are a several possible explanations for why PTSD occurs.

Psychological
When we are frightened, we remember things very clearly. Although it can be distressing to remember these things, it can help us to understand what happened and, in the long run, help us to survive.
The flashbacks can be seen as replays of what happened. They force us to think about what has happened so we might be better prepared if it were to happen again.
It is tiring and distressing to remember a trauma. Avoidance and numbing keep the number of replays down to a manageable level.
Being ‘on guard’ means that we can react quickly if another crisis happens. We sometimes see this happening with survivors of an earthquake, when there may be second or third shocks. It can also give us the energy for the work that’s needed after an accident or crisis.
But we don’t want to spend the rest of our life going over it. We only want to think about it when we have to – if we find ourselves in a similar situation.

Physical
Adrenaline is a hormone our bodies produce when we are under stress. It ‘pumps up’ the body to prepare it for action. When the stress disappears, the level of adrenaline should go back to normal. In PTSD, it may be that the vivid memories of the trauma keep the levels of adrenaline high. This will make a person tense, irritable, and unable to relax or sleep well.
The hippocampus is a part of the brain that processes memories. High levels of stress hormones, like adrenaline, can stop it from working properly – like ‘blowing a fuse’. This means that flashbacks and nightmares continue because the memories of the trauma can’t be processed. If the stress goes away, and the adrenaline levels get back to normal, the brain is able to repair the damage itself, like other natural healing processes in the body. The disturbing memories can then be processed and the flashbacks and nightmares will slowly disappear.
How do I know when I’ve got over a traumatic experience?

When you can:
think about it without becoming distressed
not feel constantly under threat
not think about it at inappropriate times.
Why is PTSD often not recognised?

None of us like to talk about upsetting events and feelings.
We may not want to admit to having symptoms because we don’t want to be thought of as weak or mentally unstable.
Doctors and other professionals are human. They may feel uncomfortable if we try to talk about gruesome or horrifying events.
People with PTSD often find it easier to talk about the other problems that go along with it – headache, sleep problems, irritability, depression, tension, substance abuse, family or work-related problems.
How can I tell if I have PTSD?

Have you experienced a traumatic event of the sort described at the start of this leaflet? If you have, do you:
have vivid memories, flashbacks or nightmares?
avoid things that remind you of the event?
feel emotionally numb at times?
feel irritable and constantly on edge, but can’t see why?
eat more than usual, or use more drink or drugs than usual?
feel out of control of your mood?
find it more difficult to get on with other people?
have to keep very busy to cope?
feel depressed or exhausted?
If it is less than 6 weeks since the traumatic event and these experiences are slowly improving, they may be part of the normal process of adjustment.
If it is more than 6 weeks since the event, and these experiences don’t seem to be getting better, it is worth talking it over with your doctor.

Children and PTSD

PTSD can develop at any age. Younger children may have upsetting dreams of the actual trauma, which then change into nightmares of monsters. They often re-live the trauma in their play. For example, a child involved in a serious road traffic accident might re-enact the crash with toy cars, over and over again.

They may lose interest in things they used to enjoy. They may find it hard to believe that they will live long enough to grow up.

They often complain of stomach aches and headaches.

How can PTSD be helped?

Helping yourself
Do ………
keep life as normal as possible
get back to your usual routine
talk about what happened to someone you trust
try relaxation exercises
go back to work
eat and exercise regularly
go back to where the traumatic event happened
take time to be with family and friends
be careful when driving – your concentration may be poor
be more careful generally – accidents are more likely at this time
speak to a doctor
expect to get better.
Don’t ……..
beat yourself up about it – PTSD symptoms are not a sign of weakness. They are a normal reaction of a normal person to terrifying experiences.
bottle up your feelings. If you have developed PTSD symptoms, don’t keep it to yourself because treatment is usually very successful.
avoid talking about it
expect the memories to go away immediately; they may be with you for quite some time
expect too much of yourself. Cut yourself a bit of slack while you adjust to what has happened.
stay away from other people
drink lots of alcohol or coffee or smoke more
get overtired
miss meals
take holidays on your own.
What can interfere with getting better?

You may find that other people may:
not let you talk about it
avoid you
be angry with you
think of you as weak
blame you.
These are all ways in which other people protect themselves from thinking about gruesome or horrifying events. It won’t help you because it doesn’t give you the chance to talk over what has happened to you. And it is hard to talk about such things.

A traumatic event can put you into a trance-like state which makes the situation seem unreal or bewildering. It is harder to deal with if you can’t remember what happened, can’t put it into words, or can’t make sense of it.

Treatment

Just as there are both psychological and physical aspects to PTSD, so there are both psychological and physical treatments for it.

Psychotherapy
All the effective psychotherapies for PTSD focus on the traumatic experience – or experiences – rather than your past life. You cannot change or forget what has happened. You can learn to think differently about it, about the world, and about your life.

You need to be able to remember what happened, as fully as possible, without being overwhelmed by fear and distress. These therapies help you to put your experiences into words. By remembering the event, going over it and making sense of it, your mind can do its normal job of storing the memories away, and moving on to other things.

When you start to feel safer, and more in control of your feelings, you won’t need to avoid the memories as much. You will be able to only think about them when you want to, rather than having them burst into your mind out of the blue.

All these treatments should all be given by PTSD specialists. The sessions should be at least weekly, with the same therapist, for 8-12 weeks. Although sessions will usually last around an hour, they can sometimes last up to 90 minutes.
Cognitive Behavioural Therapy (CBT) is a talking treatment which can help us to understand how ‘habits of thinking’ can make the PTSD worse – or even cause it. CBT can help you change these ‘extreme’ ways of thinking, which can also help you to feel better and to behave differently.

EMDR (Eye Movement Desensitisation & Reprocessing):
This is a technique which uses eye movements to help the brain to process flashbacks and to make sense of the traumatic experience. It may sound odd, but it has been shown to work.

Group therapy
This involves meeting with a group of other people who have been through the same, or a similar traumatic event. It can be easier to talk about what happened if you are with other people who have been through a similar experience.

Medication
SSRI antidepressant tablets may help to reduce the strength of PTSD symptoms and relieve any depression that is also present. They will need to be prescribed by a doctor.

This type of medication should not make you sleepy, although they all have some side-effects in some people. They may also produce unpleasant symptoms if stopped too quickly, so the dose should usually be reduced gradually. If they are helpful, you should carry on taking them for around 12 months. Soon after starting an antidepressant, some people may find that they feel more:
anxious
restless
suicidal
These feeling usually pass in a few days, but you should see a doctor regularly.

If these don’t work for you, tricyclic and MAOI antidepressants may still be helpful. For further information, see our leaflet on antidepressants.

Occasionally, if someone is so distressed that they cannot sleep or think clearly, anxiety-reducing medication may be necessary. These tablets should usually not be prescribed for more than 10 days or so.

Body-focussed therapies
These don’t help PTSD directly, but can help to control your distress and hyperarousal, the feeling of being ‘on guard’ all the time. These include physiotherapy and osteopathy, but also complementary therapies such as massage, acupuncture, reflexology, yoga, meditation and tai chi. They can help you to develop ways of relaxing and managing stress.

What works best?

At present, there is evidence that EMDR, Cognitive Behavioural Therapy, behaviour therapy and antidepressants are all effective. There is not enough information for us to show that one of these treatments is better than another. There is not yet any evidence that other forms of psychotherapy or counselling are helpful for PTSD.

Which treatment first?

Guidelines from the National Institute for Health and Care Excellence (NICE) suggest that trauma-focussed psychological therapies (CBT or EMDR) should be offered before medication, wherever possible.

For friends, relatives & colleagues

Do …….
watch out for any changes in behaviour – poor performance at work, lateness, taking sick leave, minor accidents
watch for anger, irritability, depression, lack of interest, lack of concentration
take time to allow a trauma survivor to tell their story
ask general questions
let them talk, don’t interrupt the flow or come back with your own experiences.
Don’t …….

tell a survivor you know how they feel – you don’t
tell a survivor they’re lucky to be alive – it doesn’t feel like that to them
minimise their experience – “it’s not that bad, surely …”
suggest that they just need to “pull themselves together”.
Complex PTSD

This can start weeks or months after the traumatic event, but may take years to be recognised.
Trauma affects a child’s development – the earlier the trauma, the more harm it does. Some children cope by being defensive or aggressive. Others cut themselves off from what is going on around them, and grow up with a sense of shame and guilt rather than feeling confident and good about themselves.
Adults who have been abused or tortured over a period of time develop a similar sense of separation from others, and a lack of trust in the world and other people.
As well as many of the symptoms of PTSD described above, you may find that you:
feel shame and guilt
have a sense of numbness, a lack of feelings in your body
can’t enjoy anything
control your emotions by using street drugs, alcohol, or by harming yourself
cut yourself off from what is going on around you (dissociation)
have physical symptoms caused by your distress
find that you can’t put your emotions into words
want to kill yourself
take risks and do things on the ‘spur of the moment’.
It is worse if:
it happens at an early age – the earlier the age, the worse the trauma
it is caused by a parent or other care giver
the trauma is severe
the trauma goes on for a long time
you are isolated
you are still in touch with the abuser and/or threats to your safety.
Getting better

Try to start doing the normal things of life that have nothing to do with your past experiences of trauma. This could include finding friends, getting a job, doing regular exercise, learning relaxation techniques, developing a hobby or having pets. This helps you slowly to trust the world around you.
Lack of trust in other people – and the world in general – is central to complex PTSD. Treatment often needs to be longer to allow you to develop a secure relationship with a therapist – to experience that it is possible to trust someone in this world without being hurt or abused. The work will often happen in 3 stages:

Stabilisation
You:
learn how to understand and control your distress and emotional cutting-off, or ‘dissociation’. This can involve ‘grounding’ techniques to help you to stay in the present – concentrating on ordinary physical feelings to remind you that you are living in the present, not the abusive and traumatic past.
start to ‘disconnect’ your physical symptoms of fear and anxiety from the memories and emotions that produce them, making them less frightening.
start to be able to tolerate day-to-day life without experiencing anxiety or flashbacks.
This may sometimes be the only help that is needed.

Trauma-focussed Therapy
EMDR or Cognitive Behavioural Therapy can help you to remember your traumatic experiences with less distress and more control. Other psychotherapies, including psychodynamic psychotherapy, can also be helpful. Care needs to be taken in complex PTSD because these treatments can make the situation worse if not used properly.

Reintegration
You begin to develop a new life for yourself. You become able to use your skills or learn new ones, and to make satisfying relationships in the real world.
Medication can be used if you feel too distressed or unsafe, or if psychotherapy is not possible. It can include both antidepressants and antipsychotic medication – but not usually tranquillisers or sleeping tablets.

Internet rresources

UK Psychological Trauma Society (formerly UK Trauma Group): clinical network of UK Traumatic Stress Services.
PILOTS database of the National Center for PTSD (USA): published international literature on PTSD.

David Baldwin’s Trauma Pages website: up-to-date comprehensive information about trauma including leading articles.

Sane Charity – PTSD

References

Post-traumatic Stress Disorder – The Invisible Injury ( 2002). David Kinchin. Successunlimited.
Effective Treatments for PTSD: Practice Guidelines from the International Society of Traumatic Stress Studies (2nd edition) (2010). Eds. Foa E, Keane T, Friedman M & Cohen JA.
Treating Trauma: Survivors with PTSD (2002). Ed. Yehuda, R. Washington DC. American Publishing.
Adshead G and Ferris S. Treatment of victims of trauma. Advances in Psychiatric Treatment (September 2007) 13:358-368.
Bisson JI, Pharmacological treatment of post-traumatic stress disorder. Advances in Psychiatric Treatment (March 2007) 13:119-126.
Coetzee RH and Regel S, Eye movement desensitisation and reprocessing: an update. Advances in Psychiatric Treatment (March 2005) 11:347-354.
Hull, A.M., Alexander, D.A. & Klein, S. Survivors of the Piper Alpha oil platform disaster: long-term follow-up study (2002). Br. J. Psychiatry, 181: 433 – 438
NICE guidelines (update 2012): Post-traumatic stress disorder: the management of PTSD in adults and children in primary and secondary care.
Lab, D., Santos, I. & de Zulueta, F.Treating post-traumatic stress disorder in the ‘real world’: evaluation of a specialist trauma service and adaptations to standard treatment approaches (2008). Psychiatric Bulletin, 32: 8-12.
Frueh BC, Grubaugh AL, Yeager DE and Magruder KM. Delayed-onset post-traumatic stress disorder among war veterans in primary care clinics (2009). The British Journal of Psychiatry, 194, 515–520.

Where are my human rights? Mental illness in the NHS

Over 3 weeks ago I wrote an open letter to the NHS and the Adult Mental Health Services:  https://charlottefarhanartactivism.com/2016/09/06/open-letter-to-the-mental-health-services-england-nhs/ Charlotte Farhan - Open letter to NHS

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):

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence

NHS Correspondence


NHS Correspondence


NHS Correspondence

NHS Correspondence


 

NHS Correspondence


NHS Correspondence

NHS Correspondence

NHS Correspondence


NHS Correspondence

NHS Correspondence

NHS Correspondence


For more information on Citalaopram please follow these links:

Mind: http://www.mind.org.uk/information-support/drugs-and-treatments/antidepressants-a-z/citalopram/

Head Meds: http://www.headmeds.org.uk/medications/10-citalopram/use_and_action

Mental Health Daily: http://mentalhealthdaily.com/2014/05/21/celexa-citalopram-withdrawal-symptoms-how-long-will-they-last/

Withdrawal symptoms:

  • Anxiety
  • 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.
  • Insomnia
  • 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:


If you have an emergency due to your mental illness please be safe and contact Sane: http://www.sane.org.uk/what_we_do/support/

mental-illness-meme by charlotte farhan

Being Disabled in an Able Constructed World

Since opening my eyes to the injustices I face on a daily basis and deciding to speak out, stand up and create change, it has been a rude awakening with an upward struggle of epic proportions.

When you realise the discrimination which is faced by people like yourself, who have disabilities it is daunting to imagine ever overcoming the stigma. The world is slowly becoming more aware of the struggles many different people face with the accessibility to people’s lives through the internet allowing for us to see the most vulnerable amongst us as well as the most privileged. This revolution of information is empowering to certain minority groups and marginalised people, allowing us to have a voice and a platform to discuss things which have never truly been heard – on a mass scale.

There is still a massive issue with how people see disabilities and chronic illness, especially those which are “unseen”, such as mental illnesses, neurological conditions, autoimmune diseases, heart disease, diabetes, dementia, and even cancer, the list goes on…

The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. An individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.

For those who do not know, I have been diagnosed and living with disabilities most of my life, they are all “invisible”, even if not to me.

Complex Post Traumatic Stress Disorder, Psychotic Depression, Borderline Personality Disorder, Agoraphobia, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, Attention Deficit Disorder, Depersonalisation, Derealisation,  Body Dysmorphic Disorder, Autism, Diabetes, Chronic Erythema NodosumRheumatoid arthritisPolycystic ovary syndrome.

With such a long list of chronic illnesses and disabilities, I am considered complex and have as a consequence been treated as difficult or been left to fall through the cracks of the system, not fitting into a single box to receive medical care.

Due to this “able” world we live in – I can’t even access medical care as the NHS in England does not recognise my disabilities as housebound? Even though I have not been outside, alone, for over 9 years, and sometimes can’t leave my home even when assisted, meaning at this present time (as I have no way of getting to the doctors when they are open even if I was able to go out assisted) I have NO medical care whatsoever; my medication is up for review and because of my lack of access to the services, to get reviewed I am without any medication also.

Now tell me how a person like myself is to feel?

The strongest feelings which sore through me are that of being left to die, abandoned once again, rejected by the world, by society. Being considered “high functioning” is a joke when all this apparently translates to is that of knowing my rights and being aware of my own mistreatment; as it certainly does not mean I can “function”.

Friends and family often forget about these “invisible” disabilities, asking you to go places you can’t, or not making any effort in including you in plans as they assume there is no way for you to be accommodated. Being spoken about as if you were a child and unable to make your own choices on what is best for you. An enormous pet peeve of mine is being told:

“You seem fine”

“You seem better today”

“You seem so relaxed and calm”

Unfortunately these well meant sentiments are damaging, pushing us back down, or inwardly; left feeling even more misunderstood or under the microscope. Often the reality is you are NOT fine, relaxed or calm, it is just you have adapted your behaviour as best you can to not alienate yourself, or that the symptoms you have are internal and there is no way anyone would ever “see” them, however this does not mean they are not there. As for “you seem better today”, well this one is by far the most stigmatising and leads to the most misunderstandings.

So take note able people – yes, we have some good minutes, hours, days, weeks and some even have years, this does not mean we are “cured” or that we are “better”, it just means like everyone else we fluctuate in moods, hormones; and that life can treat us well or bad which can alleviate or compound our issues. This need of yours to tell us we are “looking better” may be well meaning but it is truly just a way for your privilege to further separate us, it is as though you felt happier that our disabilities are quiet and not present to you at that moment, making you assume you can tell us how we feel or what you hope us to feel. You do not do this because you wish to be unkind, in fact the motivation seems to be the opposite, however the affect these simple words jumbled into a sentences causes, is unimaginable to those who have not experienced this existence.

In order to “cope” or seem like I am “coping” sedation with drugs, such as painkillers or cannabis, allow me to shut down most of my thoughts and concentrate on being present with my friends and family for short periods of time which means being on a unrealistic high around most people, confusing the situation more, as you are never truly yourself. Many people like myself take drugs for pain relief or some kind of mind altering substance in order to “function” as best they can in company. Through societal pressures to conform, we do this more for you; the able ones. Many of us learn early on how we are received when we are “out there” with our disabilities on show – as much as you can when they are unseen. After being told we are attention seekers, drama queens, liabilities, hand-fulls, trouble, a worry, or after just losing people as they up and leave because you are “too hard work”; this is when the survival skills kick in, conformity becomes your best defence, until you are unable to maintain the facade and become the reclusive “weirdo” society deemed you to be all along.

There are so many things to discuss with regards to being in an able dominated world, with everyone’s story being different. These are my musings on the subject at this present time, with the hope to add more to this discussion. Since being rejected and my civil liberties being taken from me I have been awoken, my only chance to survive is to change this, is to stand up and scream at the top of my lungs;

“I will not go silently, you can’t erase me, I have rights and I shall be heard”

For all those who call me: “a victim who wears her disabilities as a badge of honour”  you seem to be confused?

The way to survive after being a victim, marginalised, discriminated against and continuously pushed down is to play to your strengths and extend your hand to those who can not even do this, there is no shame in having been a victim or even if you are right now. Victim is NOT a dirty word! Chances are if you are a “victim” it means you have survived – you have faced something which unless experienced by others they will not understand, all experiences are unique and can be hard to understand even when you have the same disabilities – however checking your able privilege is not difficult it just means you must place your ego to one side and accept another humans experience.

Even though my fight may not always be as strong each day, as some days feeling defeated is all that can be felt, just breathing is too much to bear. The commitment inside me to this is my purpose for existing. Not being able to have children, with no blood family; this is my legacy, my nurturing, me giving of myself as selflessly as possible. This is my art, my activism, this is my life and not a “trend” or “fad” for you to disagree with.


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Ableism: when educating people on their own struggles is harmful

Ableism
This is not my usual post and contemplated not writing this at all, however the urge kept coming back and the reason for this was simple, I had been silenced and needed to be heard. Before I begin this is in no way a post to shame anyone, it is to highlight an issue which many do not take seriously as they are privileged in not experiencing the persecutions and discrimination that people such as myself have to endure most days.
There is this woman, called Laura who has a popular blog called Skinny And Single and she often writes day to day stuff. Her tag line is already problematic as it states:
 “Single and Over 40 and Not Suicidal About It”
Recently when reading her posts, which has been over the last few month I noticed her use of certain language, which was stigmatising towards mentally ill people and people with disabilities – as well as finding her writing exceptionally privileged, with little care for who she judges, belittles or creates further stigma for. Under the disguise of humour, with the attitude of “well it’s all OK if I didn’t really mean it” kind-a-thing. With a get out clause which seems to be a very “in” thing to do at the moment, which is to state, “I am just being honest or real” as if this were a license to cause harm wherever one wishes.
ableist bingo
After her most recent post “Seven People That Need Punched In The Crotch ” I decided to un-follow her blog and social media sites as I just didn’t like her style, judgement and writing, having tried to see the funny side but failing as her use of what she calls “satire” is not my understanding of it. Being French/British – in both my countries we relish in satirical humour which is a great way to poke fun at current affairs, it is by definition:
The use of humour, irony, exaggeration, or ridicule to expose and criticize people’s stupidity or vices, particularly in the context of contemporarypolitics and other topicalissues.
In England and France we use this humour to expose and ridicule the elites, those in power and the upper classes, and now celebrities; it is rarely used against people from minority groups. This is why when I saw her blog posts in our online community of #LinkYourLife I gave them a read before coming to these conclusions. This is what led me to contact her with my feedback as a mentally ill person, in a calm way – to maybe highlight something which she may not have realised was even in her writing.
I tweeted her and told her in a playful way:
“I am glad I am in the UK so you can’t punch me in the crotch”
thinking this would be a nice way to address the issue, trying to be humorous was my attempt at connecting on a level (especially on twitter with so few characters). The tweet didn’t really get me anywhere so thought to myself:
“just be direct Charlotte”
tweeting her again and telling her that she had used stigmatising language and I referenced her latest blog post and the last sentence; which needed addressing, where she stated:
“I am not a crack pot either. I am a regular woman,”
which was in reference to not being a feminist.
You can disagree with feminism all you wish, but the use of the word crackpot just left me feeling stigmatised, for I have been referred to as crackpot, and have been pushed down by so many with these kinds of words – ringing in my ears.
Ableism
In response to this she became very defensive and told me outright that this was not the case, she even had a friend join in who writes a blog on her issues with bipolar disorder, (someone who I thought would at least let me speak), but they both decided to educate me on how this language was not stigmatisation and that in fact, Laura does a lot to help people with mental illness.
Not me – but others.
This was very silencing for me – an actual mentally ill person, who has sever mental illness and has had this since being a child, I know first hand what discrimination against the mentally ill can feel like, having to fight for almost every right I have, and still my civil rights are very limited, with no earning privileges or work opportunities, no medical health care due to austerity in the UK and there not being the services, having to fight my way through education to get the same chance as other students, and these are just a few examples.
Laura, decided to bombard me with questions and was pressuring me to tell her exactly what it was she was doing wrong, the tweets felt like someone knocking loudly on my skull, I couldn’t think and twitter wanted me to write it to her in so few characters, the pressure mounted so high that I experienced sensory overload and had to lay down, before leaving my laptop, I tweeted her to say this had happened and that I would do my best to reply to her as quickly as possible.
Feeling so defeated by this I left it for a week before trying to respond to Laura with my rebuttal to her questions and stance. The following Friday the same post of hers came up in my news feed and reminded me that I had not replied to her and needed to. I tweeted her and explained my position.
She tweeted back:
“I don’t care and I feel sorry for you”
Wow! This hurt so much, I could feel the tears rising in my eyes and my throat got tight, my thoughts started racing and the anxiety hit me like a ton of bricks. Laura then decided to tell me that I did not know what ableism was?
She even sent me a handy Wikipedia link, this was devastating, again it was like she was reaching inside my throat and ripping out my vocal cords as she took my disabilities and used them to prop herself up and exert her privilege over me even more.
This woman does not know me, or what I suffer from, which are both physical and mental disabilities, as I have mobility issues as well as my mental health and neurological issues. This may have been an attempt to make me look stupid, as she had clearly just googled “ableism” and thought in this quick search that she knew all there was to know about the community of people including myself – fighting everyday to have our rights taken seriously and for the abusive language which has kept us as an under class in society for hundreds of years – to stop, making us untrustworthy, unemployable and so many more things which of course are not true and just discrimination.
including-kids-and-teens-with-mental-illness-in-the-church-and-community-7-638
Ableism was first a movement for people who were discriminated against by able-people, this was just a “physical” thing at first, however as the community grew and became more aware of the discrimination people with mental illness and neurological conditions faced, the movement merged with what was known as sanism, so that there was no difference made between physical and mental as we try and educate people that mental/neurological, is also physical as it causes so many physical problems for its sufferers. With more and more research being done within these fields, we now know that physical differences can be seen in peoples brains who have mental illness as well as certain conditions such as PTSD (which I have) can cause physical pain, and is considered neurological damage.
This is why when she tried to educate me on my own discrimination it felt so isolating and cruel. There is no hate for Laura and her blog, all I wish she could have done is taken a moment to listen to me, understand where I was coming from and possibly check her own privilege over the matter.
Never would I tell someone to not post something, but rather to think before posting, and if you don’t care about upsetting the cause then own this too. Don’t pretend to be a champion for us when you stigmatise us with your own language.
All I had to do was un-follow and move on, however before moving on, my voice had to be heard and my cause had to be fought.
The last comments before she blocked me were that she felt sorry for me. Another terrible thing to say to someone with disabilities, in no way do I need anyone to feel sorry for me, especially when it is said with disdain.
All I and others want in our community is less discrimination, stigma, marginalisation and the chance to be the voice of our own lives.

As an example let us dissect what “crackpot” actually means and how it has been used against the mentally ill and those with neurological damage and injury.

‘crackpot’ is a shortened form of ‘cracked-pot’, which splits into its constituent parts, cracked and pot.

Cracked:

Cracked is itself a shortening of ‘brain-cracked’ (or cracked-brained’). ‘Cracked’ simply meant ‘impaired’; ‘faulty’. Both of these terms were current in the 17th century. For instance:

In John Canne’s A Necessity of Separation from the Church of England, 1634, we find:

If Mr. Bradshaw had found such a reason in Mr, Johnson’s writing, he would surely have called idle head, cracked-brained, fool etc.

Pot:

In the Middle Ages, ‘pot’ was used to mean ‘skull’ or ‘head’; for example, this piece from Guy de Chauliac’s translation of Grande Chirurgie, circa 1425:

Ye pot of ye heued

So, a ‘cracked pot’ was a ‘faulty head’ and crackpot is synonymous with our more recent terms ‘numbskull’, ‘blockhead’, ‘brain-dead’ etc.


Further Reading:

Here is some further information on the continued discrimination of the mentally ill depicted and perpetuated trough media:

 These key facts and statistics about mental health problems can help to challenge the myths that can contribute to the stigma that many people still face.

http://www.time-to-change.org.uk/mental-health-statistics-facts

And here is a great list of things which need to change and I suggest anyone who is unfamiliar with this movement and issue read this too:

https://mic.com/articles/121653/6-forms-of-ableism-we-need-to-retire-immediately#.LB7ZlAV1C

Upworthy-MEME