Infertility gave me the chance to question my abilities and accept being child free

(Please be aware that this essay is my opinion and represents my life. In no way am I judging anyone for their life choices with this piece) 

Being child-free was not my first choice; like most people the indoctrination of the projected ideal of “family”, being specifically to procreate in a hetro-normative way, had been passed down to me through relatives, religion, culture and societal norms – there was never a need to challenge this or think of a life otherwise inclined. Everything reflected this narrative, in literature, film, TV, cartoons and advertising – all showing you the eventuality of having children and it being the “right” thing to do.

My first ever fears of not being able to achieve this pre-prescribed life was at the age of 7. My fear arose upon realising that I liked boys and girls romantically, already having fancied and kissed both, my mind was now confused; to what this made me? Could I have a “normal” life, because no one else seemed to be like me? Running to my Mother in tears I tried to convey all of these fears and express the isolation that I had already perceived as my future. My Mother simply said to me:

“This is a phase and everyone experiences it, you will grow out of this and get married and have babies”

Looking back on this moment it is strange as my Mother was considered a “progressive”, she stood for equality and claimed to be a feminist (a very privileged second-wave white feminist who echoed Germaine Greer) but still in comparison to my racist and homophobic Father and grandparents on both sides, my Mother always seemed like a beacon of light in a murky prejudice swamp of people.

My Mother challenged marriage and did not think it was anything other than a legal agreement which protected you financially, often saying that she didn’t even want or need a man, just a child (me) and the two of us facing the world. However my Mother seemed convinced I was a “mother earth” type – stating I (even when very young) had always displayed maternal qualities – qualities she would say she did not possess.

At the age of 18 my boyfriend (now husband) and I got pregnant. We were living together in rented accommodation that we could not afford and could barely feed ourselves. At this point my mental health had taken another nose dive, my agoraphobia started at this point and was still having regular psychotic episodes, being very unsafe and destructive with myself due to my borderline personality disorder. Stability was no where to be found, except in one another. To make things more complicated my boyfriend is Muslim and we did not want the family to hate me and know we had sex outside of marriage (in hindsight this would not have happened as the family are beautiful people – but we were kids ourselves and scared). We decided to get an abortion.

As a survivor of CSA, rape and sexual assault the termination procedure was very triggering for me. Vaginal examinations cause me to have sever flashbacks, which causes me to experience chronic pain in my vagina and anus, this is due to complex post traumatic stress disorder. As I was at the latest stage of being able to have a termination I had to be put under general anaesthetic – reminding me of the internal surgery I had after I was violently raped at 15.

When I phoned my Mother to tell her, she at first misheard me and thought I said “I am not having an abortion”, well thank goodness this was not the case, she started screaming down the phone telling me:

“you stupid girl, you will ruin your life, you have to have an abortion”

AT 26 years old my boyfriend (now husband) and I started to try for a baby, we were more mature and intended on getting married in the near future, so we joyfully prepared for our “real” lives to begin as parents. After 3 months I got pregnant and we couldn’t have been happier, all our plans and dreams were going to be put into practice and realised. However after our first visual scan – after seeing our little life we had created; in the early hours I miscarried. It was an ordeal like no other, experiencing the loss physically and emotionally, the pain mocking you and the world reminding you that you have failed and that it is most probably your own fault.

Friends and family were either unable to comfort me due to awkwardness or the projection of their own fears, together repeating the mantra:

“this one wasn’t meant to be.”

My husband and I still grieve to this day for this loss.

Soon after the miscarriage I was diagnosed with polycystic ovary syndrome (PCOS) , this diagnosis was a shock and scared me so much that for another 4 years I did not address my PCOS and ignored all the symptoms and hid my head in the sand – not wanting to face it. The doctors told me that it was likely that my anorexia and bulimia had given me a metabolic disorder which had lead to PCOS. Then just before I turned 30, after almost 2 years of feeling at deaths door and putting on lots of weight even though I wasn’t eating much, I was diagnosed with Type 2 diabetes which I developed from having PCOS.

The girl with the eating disorder inside me saw this as the biggest failure possible. These illnesses were considered by society as “fat people sickness” deemed to be the responsibility of the overweight and lazy, the burdens on the NHS and society. For the first time since I was 11 I felt I couldn’t take back control of my body, as I always had during periods of extreme stress and emotional unrest. No longer able to starve myself like I had , especially if I wanted to have a baby.

The anger toward myself was violent, wanting to rip my flesh and fat off my body, often obsessively imagining cutting fat with scissors, wanting to stab myself in the ovaries and remove the cysts.

After the diagnosis and being at the doctors and hospital appointments weekly, the eventual conversation began about whether I wanted to have children or not and what fertility treatments were available to me. Even being referred to a diabetic midwife to get the best advice possible due to my PCOS and diabetes. At this point feeling confident we would be able to conceive. People kept telling me that the fact I had been pregnant twice before meant that it was just a matter of time and patience. So my husband and I persevered and continued to do all we were told.

We had been trying for over 2 years and we had no luck, the next step was for me to go to the doctors and ask what our options were for fertility treatments. Due to my disabilities, visiting the GP surgery  is an ordeal in itself, unable to go unassisted my husband came with me, however I went into the appointment alone as knowing there would be a lot of fat shaming, which would embarrass me in front of my husband.

Walking in, this unwanted feeling of loss surged through me – feeling emotional and anxious, adrenaline pumping through me, shaking, I sat down. The doctor asked what they could do for me. Explaining as clearly as possible my situation whilst gasping for air through shear panic. After the usual chit chat about my medication, diabetes checks and general well being – I took the plunge and asked:

“What are my fertility options?”

The doctor tilted their head in that manner which suggests pity. The following information was about to hit my ears and puncture my heart:

“Unfortunately your BMI is too high for us to give you any fertility treatment, if you can loose the extra weight before you are 35 then we can give you IVF treatment, ideally you would start fertility treatment now due to your age.”

My heart stopped for what seemed like a lifetime, the tears swelled in my eyes and throat and the rage inside me was switched on. Indignant to the ridiculous hoops, that metaphorically were too small for my fat sickly body to jump through. The doctor knew that due to my circumstances that this achievement was highly unlikely, having PCOS and Diabetes made it very hard to loose weight, not impossible but certainly challenging, especially when unable to leave your house freely and in a time constrained manner. Having lost so much weight since my diagnosis, logically my thoughts were that fertility treatment would be a woman’s right and that I had shown my commitment to being healthy. Not, however, arbitrary bureaucracy dictating that my weight fit into the predetermined “one size fits all” paradigm, due to the outdated system that is BMI testing. As a tall, big framed person – my BMI has been high even when visibly skinny.

My voice was irate, my tears chocked me and my anger made me shake – the “hysterical” mentally ill person was about to blow, you could see my doctor visibly lean back – ready for impact. Crying through my words I said:

“But how is this fair? How can you treat women this way? These rules are ridiculous and penalise people who are over weight, even if they are as healthy as they can be. Fat people get pregnant all the time, I see them!”

My doctor explained to me it was due to the area I lived in, in other areas of the country women have until they are 40 and the weight requirement is not an issue. This injustice made me feel detached and empty. They didn’t care that I was severely mentally ill, that leaving the house on my own was impossible, making regular exercise difficult. Even reverting back to my anorexic or bulimic ways was not an option, not eating now made my  pancreas produce less insulin, my liver produce more glucose, which makes my body store fat. These requirements gave me (a now 31 year old) 3 years to loose weight and then 1 year in which to conceive with IVF. To some this may seem achievable, for me I knew that the impact this would have on my physical and mental health was dangerous. That already the obsessive thoughts had begun:

“I wont eat. I will exercise excessively at home. If I am stressed I will have to start to self harm again, to keep the pain controlled and away from others. I will have to only focus on this until I get pregnant – nothing else will matter, If I don’t succeed I shall have to kill myself.”

These thoughts took over and were at the back of my mind when I told my husband what the doctor had said, pretending that to a certain extent I was OK, that I could handle this. Although there was this little voice inside me, whispering repeatedly:

“Is this what a safe Mother would do? Is this the parent I want to be – half dead by the time a baby arrives? Will I be able to regain mental stability once pregnant or once the child is born? What if we miscarry again? What if this recreates a dangerous environment for my child, such as the one I grew up in?”

In hindsight the realisation had already hit me, that was the end, the end of that dream. That the answer to all my thoughts and questions were right there in front of me. Not realising it at that point, but a valuable lesson, a pause in the rat race for the nuclear family, an opportunity not granted to most – a chance to question all of this!

Over the next 2 years keeping most of this to myself, especially because when you do tell people, they can not help themselves but say:

“This will happen for you, I will keep the faith”

Not realising how damaging these words are, making you feel like less of a woman or human – for the fact you had lost “faith” or that this will not happen for you at all. This made me feel very alone and meant my grief was shoved down and buried. More opinions from people were:

“Why not adopt?”

The answer was simple – in this country (the UK) I am considered as a severely mentally ill person, who cannot adopt. This at first seems like an injustice. Yet if you think about the fact that severe mental illness is an umbrella of disorders some of which mean you can be a danger to yourself and others, you can deduce that this is for the protection of vulnerable children and not to discriminate the mentally ill. This does not mean that there shouldn’t be further investigation, to look at how to give those who may have chronic mental illness and wish to have children more support.

You see mental illness is almost viewed in groups. It starts off with situational and circumstantial reactions to the stressful eventualities and life events we face, such as grief, stress and low self esteem which can cause bouts of depression and anxiety – normally affecting an individual for less than a year. Then you have people who have mood, personality and anxiety disorders for more than 1 year or chronically, such as: bi-polar disorder, addiction and impulse control, clinical depression, personality disorders, OCD, generalised anxiety disorder, eating disorders etc. Then there are disorders considered severe which are psychotic disorders such as schizophrenia, psychotic depression and postpartum Psychosis, as well as trauma related disorders such as post traumatic stress disorder, either complex or non-complex. 

Most people who suffer mental illness in their life time, do so for short periods or their illness does not affect their ability to lead a functional life. However some of us have severe mental illness which impacts everything in our day to day lives, our abilities to function and take care of ourselves are impaired and the likelihood of impulsive unsafe behaviour is higher. So the point I am trying to illustrate is that – there is a point to this rule – to be properly assessed makes sense. Furthermore only the individual can really know if they can or cannot take care of a child, asking themselves:

“Am I too ill to have a child and take care of that child, to not impact them in a negative way with my illnesses and disabilities?”

The realisation was clear and logical, the answer for me, personally, YES!

Asking myself continuously why the need to have children and each time it was apparent to me that all my motivations were selfish. Wanting a child so that I could experience a “happy family”, to “break the cycle” of abuse and neglect I had faced, to witness my husband be a Father so that I could experience a healthy Father and child relationship, so that if my husband died I would have a part of him still here. None of these reasons seemed good enough, seeming empty and damaging to a child.

Thinking of myself when young and the pain endured from my parents, who really should have questioned everything before bringing me into the world. Possibly concluding it was just to fuck me up and narcissistically abandon me or hold me emotionally hostage. Or maybe it was to love and be loved and things changed, as life does. Whatever the reason – the reasons were never challenged, the status quo needed to be maintained, as would have been if I was never afforded the opportunity to question my abilities as a parent. It is never a bad thing to ask yourself:

“Can I truly (to the best of my knowledge) say that upon having a child that I shall be able to look after them, emotionally, physically, fiscally and that I shall not put my child in danger due to selfish needs and ego”

Genuinely most people will think they can do this (I did too), however the statistics of child abuse, neglect and sexual abuse paint a different picture. Furthermore the extremes are not the only damage that can be done, the importance of functional safe upbringings is fundamental to bettering the physical and mental health of children collectively. Too often the selfish needs of adults cause children the most harm. Having children or caring for children is a privilege, it is not to be taken lightly and your rights to “have them” does not override their right to exist in a safe environment.

Even though grieving for what could have been, for dreams that were never realised is still a process I am very much in, the reality that having a child would be unsafe for both me and said child; makes me feel better about my decision to not pursue something that has already been taken off the table. My focus is now on imagining and realising a new life  more suitable for me.

Yes, being child free was not my first choice – in spite of this my choices now as a child-free person are limitless.

 


If you have any feedback on this essay please fill in the form below:


Essay by Charlotte Farhan

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:

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

Dear Mental Health Services England (NHS)

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

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

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

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

 

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

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

I do NOT accept this!

I need the Solent NHS Trust to help me so I can have the same human rights to care as others
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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

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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