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:

 

20170303_161318.jpg

 

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.)

 

2017-06-3-10-35-08

 

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.

 

2017-06-3-10-45-14

20170306_105831.jpg

 

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:

 

2017-06-3-10-53-42

 

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.

 

20170306_110001.jpg

20170306_110040.jpg

20170306_110356.jpg

2017-06-3-11-25-36

20170306_110110.jpg

 

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.

 

20170306_110421.jpg

20170306_105926.jpg

 

(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:

 

2017-06-3-11-29-33

2017-06-3-11-27-44

2017-06-3-11-26-15

20170306_110443.jpg

20170306_110241.jpg

20170306_110001.jpg

 

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.:

 

2017-06-3-11-32-31

2017-06-3-11-33-18

 

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:

 

2017-06-3-11-34-51

 

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):

 

20170303_162118.jpg

 

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:

 

screenshot-54

 

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.)

 

screenshot-55

screenshot-56

 

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:

 

screenshot-52

 

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:

 

screenshot-51

(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:

 

17103400_412272895787099_2260467683999062054_n

 

I received more the next day:

 

screenshot-58

screenshot-59

screenshot-60

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:

img-20170303-wa0004.jpg

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.

img-20170303-wa0002.jpg

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

img-20170303-wa0003-2

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:

screenshot-61 screenshot-62 screenshot-63

*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:

Everyone is Watching – Art and Poetry By Charlotte Farhan

Everyone is Watching - By Charlotte Farhan

Everyone is Watching – By Charlotte Farhan

With this unseen malady,
the world is set to a different frequency,
faces move past with only apathy,
when they can’t fit you into a box,
intelligent, irrational, focused, erratic…
you seem a paradox.

Knowing people question me,
life feels scrutinised,
under the microscope,
wishing to be disguised,
not made to walk this tightrope.

Being able to be free,
not continuously analysed,
a participant, not an absentee,
hearing my voice,
without having to be patronised,
without having to prove my disabilities,
they love to give you the third degree,
have I not proved my invincibility?

We the stigmatised,
are not your problem to fix,
not here to be tamed and civilised,
neither will I be cured by your crucifix ,
“God only gives us what we can handle”
is this a joke – a chance to poke,
superstition and dogma we must dismantle,
instead with these ideas they provoke.

Everyone is watching me,
no longer left alone to recover,
my life is not something you can disagree,
they want to rip it away – uncover,
these things you can’t see,
no one would want this,
so with this plea,
stop watching me.


If you would like any information or would like to give feedback, please use this contact form:

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

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

Dear Mental Health Services England (NHS)

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

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

For the past 9 months or so I have been left untreated and unsupported by my GP surgery – which is Baffins Surgery Portsmouth and Solent NHS Trust as well as other departments. I used to have a family member who was able to take me to the many medical appointments a person like myself has, but unfortunately I no longer have this family member in my life and since then have been unable to access any care, appointments and clinics. This is because the NHS does not deem people like myself (mentally ill) to be housebound – even when they have conditions which specifically challenge their freedom to leave the house, to interact with people, to use the phone and lead independent lives. This is discrimination and against my human rights to access care.

I have asked my GP and Solent NHS Trust to help me again and again, it is not until I tweeted them in crisis (I am having a breakdown) that they have responded, and still now they keep offering me appointments which I can not get to.

 

screenshot-100

screenshot-101

 

Due to my conditions (which my surgery is well aware of as I have been in the mental health services since I was 12) I am unable to leave the house on my own (I have not done so for 10 years), a lot of the time I can not leave the house at all, I can not use the phone to call out or receive calls due to my disorders, my husband is my only family and he works during my GP’s surgery hours for appointments and telephone calls. When accompanied outside by a safe person,  I can not order my own food, ask strangers for help or cross the road on my own. As well as this I experience sensory overload when outside, loud noises cause me physical pain, I am on high alert and most of the time can only deal with basic communication.

I have been told that people with mental illness can not qualify as being housebound, even though my conditions cause me to be this way, I was told there is nothing that can be done!

I do NOT accept this!

I need the Solent NHS Trust to help me so I can have the same human rights to care as others
.
I need a support worker to take me to all my medical appointments as well as the need for home visits from my GP for when I am unable to leave the house at all.

Since this happened I have been unable to continue my diabetic treatments, clinics and check ups as my surgery will not do home visits and all blood test clinics are in the morning when my husband is not available. So my diabetes could be getting worse I would have no way of knowing, until too late.

I am also unable to have fertility treatment as I am unable to get the help I need to qualify as I have PCOS and am now infertile.

I have something called chronic erythema nodosum which needs to be checked often to make sure I do not have any other illnesses associated with it.

I have arthritis and it is getting worse I need help as sometimes I can not move due to the sever pain in my ankles, knees and wrists, I now have a walking cane.

As for my mental health, well this is the area I have been failed in since I was first in the adolescent mental health services at 12. I have endured mistreatment from many practitioners, including victim blaming, sexual assault in a psychiatric facility at 15, by two male in patients, I have been told I am “too intelligent” to receive care, “too high functioning” and I have been stigmatised for having borderline personality disorder by many practitioners who have deemed me manipulative or attention seeking, when in fact I was in crisis. I have been left with no help or they have tried to section me, there is no in between. I was put on anti-psychotics at 15 years old and was like a zombie for most of my late teens and early twenties. I have been offered treatments which I can not get to, or things which would cause my other conditions to be triggered. I have had no treatment for my C-PTSD except for a un-completed 6 week session of reliving therapy (as my therapist left) which has left me open and more unwell than before, causing my psychotic depression to flair up and experience psychosis regularly. I was put on anti-anxiety medication as I have so many anxiety disorders and then due to not being able to be seen by a GP, the surgery put my medication up for review even though I could not attend an appointment, which meant my medication was stopped abruptly, giving me side affects to withdrawal – which has left me in constant fight or flight and suicidal. These conditions are chronic and serious and cause me to lead a very limited life.

I only have this energy because I decided to give this one last go – one last fight – before I give up. My husband has to deal with this on his own, he is terrified of what will happen to me, where is his support also?

I have been a victim to so much in my life, I suffered neglect and child abuse, a violent rape at 15, and being sexually assaulted by two male in-patients on separate occasions within the NHS Woodside psychiatric adolescent unit in Epsom in 1999 and these are just the worst events, I have suffered much more. But I survived these ordeals even though I am affected by them every day, especially living with C-PTSD, however I survived, all I ask is the chance to live, to have basic human rights, that the duty of care you have is observed when treating me and that I am not left to die!

I also know I am not alone, there are so many of us that are being failed and left to die, you don’t hear them because they have no voice, I also stand for them as I too have been silenced by this ableism, this marginalisation, this stigma and appalling treatment. The only reason I am able to fight is because I have a platform, so I am screaming as loud as I can with the hope you will hear me and help me, and furthermore with the hope you do not continue this lack of care with others, even though I am sure this will not change anything, maybe it will break the silence.

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

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

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


HERE IS HOW YOU CAN HELP ME!

  • Firstly share this open letter with anyone and everyone.
  • I need the Solent NHS Trust to help me so I can have the same human rights to care as others. So here is what I need – send them this open letter:
  • Or email them: communications@solent.nhs.uk
  • Someone will be creating a petition for me too, so I shall add this to the post when it is up and running.
  • I am also writing an official complaint to the NHS.
  • If you have a similar story to this or have anything you wish to add, I would love to hear from you, please fill in this form:


I am running out of steam, I am using every last bit of energy I have to fight for my life, this is the best I could do and is not a comprehensive detailed reflection of the abuse, stigma and human rights violations I have suffered from the NHS as a whole.
All I ask is you HEAR ME, BELIEVE ME and do this for me, for us.
Thank you xxxxx

 

Charlotte Farhan - Open letter to NHS

Neuro-divergent me – A Poem by Charlotte Farhan

Neuro-divergent me

 

There are parts of my brain,

people call sick,

inside things can’t configure – to the accepted standard.

There were times when fitting me into a box,

was a main concern.

Or blame – who’s left her out too long

too often, too little.

How about inside,

thoughts, dreams, the others in here?

Feelings which overwhelm,

sensory information begins to concentrate,

like compressed gas in a cylinder.

Pain is all that can be felt,

physical surges through my spinal cord,

to my brain – the host.

Being born with this disposition,

having an environment devastated.

Parents – the same chemistry

Clueless in their own damnation

However happily participating

in their haphazard irony.

Not typical, not normal,

they said and continue to claim.

“she’s weird, she doesn’t look me in the eye”

they whisper whilst backing away.

Thought of as rude, too direct,

judgements made habitually,

privileges left unchecked.

My cognition brought into question,

By those who never had to confabulate.

The world is not odd to me,

as it is all I can see,

you need to cure me.

Not trusting my words and memories,

abusing me,

leaving me.


when I close my eyes - by Charlotte Farhan

When I close my eyes – by Charlotte Farhan

 

Art and poetry by Charlotte Farhan.

If you would like to know more or have any questions please fill in this form:

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.


7572fae8c9961e53df0f9778c86504d4