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:

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