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.

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

I ask you to remember this when you next use a label associated with mental illness

As an activist and campaigner I fight everyday to end stigma against the mentally ill and do this as a person who has been stigmatised since being a child – for my disability due to neurological damage from trauma and my genetic neurodiversity.
When there are mass shootings, murders and acts of terrorism the common labels are thrown about. Now I can not stop people from using words which stigmatise the mentally ill in everyday life, as this would be impossible, the words which come out are often misguided or just common place. However this does not mean they do not have an affect on me, and our community.  In challenging these reactions and the usual rhetoric we must first admit that there is an issue, that words are not just words – they have impact and consequences. We must look at labelling, stereotyping, cognitive separating, emotional reactions, status loss, and discrimination. As we must do with all the diversity in the world.
As someone who is married to a Muslim, my husband and I often sit there and see which one of us will get the blame when a news report states a mass murder or a shooting/stabbing/beheading, more often than not, both of us do. A mentally ill, Islamic terrorist is normally the go to. However if the individual is white – then no religion or political persuasion is highlighted, but mental illness as a label and cause remains. None of these factors are relevant in the end, as the criminal was a murderer – a killer of humanity at its essence. Hate has no religion, disability, sexuality, gender, race – hate is hate.
However I am speaking as a mentally ill person so this is my voice and focus.

Here are some facts on Violence & mental health (from Time To Change)

Over a third of the public think people with a mental health problem are likely to be violent – in fact people with severe mental illnesses are more likely to be victims, rather than perpetrators, of violent crime

The Facts

  • The majority of violent crimes and homicides are committed by people who do not have mental health problems.
  • People with mental health problems are more dangerous to themselves than they are to others: 90 per cent of people who die through suicide in the UK are experiencing mental distress.
  • In 2009, the total population in England and Wales was just over 43 million. It is estimated that about one in six of the adult population will have a significant mental health problem at any one time (more than 7 million people). Given this number and the 50–70 cases of homicide a year involving people known to have a mental health problem at the time of the murder, clearly the statistics data do not support the sensationalised media coverage about the danger that people with mental health problems present to the community.
  • According to the British Crime Survey, almost half (47 per cent) of the victims of violent crimes believed that their offender was under the influence of alcohol and about 17 per cent believed that the offender was under the influence of drugs. Another survey suggested that about 30 per cent of victims believed that the offender attacked them because they were under the influence of drugs or alcohol. In contrast, only 1 per centof victims believed that the violent incident happened because the offender had a mental illness.
  • Contrary to popular belief, the incidence of homicide committed by people diagnosed with mental health problems has stayed at a fairly constant level since the 1990s
  • Substance abuse appears to play a role: The prevalence of violence is higher among people who have symptoms of substance abuse (including discharged psychiatric patients and non-patients).

Reporting stories featuring violence and mental health problems

  • stick to the facts – don’t speculate about someone’s mental health being a factor unless the facts are clear
  • consider including contextualising facts about how very few people with mental health problems are violent
  • seek comment from a mental health charity such as Mind or Rethink Mental Illness
  • speak to the perpetrator’s family – often they are victims too with compelling stories to tell

So I ask you to remember this when you next go to use a label associated with mental illness / disability / neurodiversity:
When YOU use the words: nut-job, psycho, maniac, crazy, insane, psychopath, nutter… to describe criminals and their actions YOU put us back in the dark ages.
When YOU associate mass murder with mental illness you demonise us.
You put me and others in danger.
You isolate the already isolated.
You cause further illness to us.
You criminalise us, which we have been fighting to end since the asylums closed.
You excuse hate and name it “mental illness”.
You echo the rhetoric of the far right, the fascists, the eugenicists, the people who have robbed us of our humanity and freedom, the people who want us destroyed.
You take away our civil rights.
You hand us the knife, the noose, the pill bottle.
You are part of the problem and YOU need to STOP!
Also:
Could non disabled / neuro-divergent / mentally ill people
STOP speaking for us!
Stop pushing us down with your privilege!
Stop telling people how “we” feel.
Be our allies – support us, just DON’T speak for us.

neurodiversity
Charlotte Farhan Quote