What *not to do* when starting University as a disabled student Tuesday, Aug 15 2017 

A student starting university is faced with overloading quantities of information about what they must and should do in order to “get the most out of the student experience”. There is a pile of administrative stuff to start; from getting your student card, enrolling on your degree programme, registering with the doctors, choosing modules, learning all the lingo, attending all the introductory lectures and events, aaaaand getting to know your way around the campus (seriously that map will be your BFF for about a month). Then there is all the new and exciting living stuff, like; getting your room keys, fighting over your own fridge shelf and kitchen cupboard, buying your own crockery, cutlery and cooking equipment, not to mention towels and toilet paper, changing your postal address, avoiding the TV license people, learning how to use the washing machine / tumble drier / oven, doing your own shopping, and getting to know your hall-mates. Then there is the heady and seductive combination of seemingly limitless money and access to pubs, bars, and clubs every day of the week. Not to mention the overwhelming sensation of any or all of the following emotions; abandonment, freedom, loneliness, responsibility, excitement, shyness, and the ever-present danger that no-one will be around to help you if you find a spider in your bedroom. This is a lot for anyone to take in, so screw “getting the most” out of the experience and welcome to “surviving your first weeks of fresher’s year”!!

Whilst this is all hugely exciting and terrifying in somewhat equal measure it is nice to know that everyone muddles through somehow, and that tens of thousands of students make this transition every single year across the country. What most of those tens of thousands don’t deal with, however, is adjusting to university life as a disabled student. And I can tell you that I made a spectacular mess of that!! So what follows is my list of what not to do as a disabled first year student, which might give you some idea of how to do a better job of starting your degree than I did.



1) be in total denial about your health:
some chronic illnesses take a long time to diagnose, and after four or more years of bad health I was finally given a partial diagnosis in the months before I started university. The prognosis was less than encouraging and, though I didn’t realise it at the time, I was in complete denial for a very long time. I simply did not accept that my condition would have any impact on my studies or my career. I would not let it ruin my life, especially when going to university was all I had wanted since I could remember. I didn’t spend one minute considering what I might have to sacrifice or adjust in order to survive living by myself. I only just had the foresight to apply for “disabled” accommodation because my mum was helping me choose halls. I did not register as a disabled student or seek any pastoral help, because I refused to think of myself in that way. My First Term experience will explain why this was a bad, bad idea.

There was pain. So, so much pain. I’d never had to walk so much in my life. There was the daily walks to lectures, to the shops, to the student events, to friends halls. All the while carrying books, laptops, groceries. The library was up a flight of stairs and then another flight inside the building, then you had to walk miles inside to find the books, then carry them back out again. Back to back lectures would be in different buildings on opposite sides of campus, so while everyone else rushed off from one to the other and pounded up the stairs to get there on time, I had to meander my way and then wait for the lifts in both buildings. So I was frequently late. After only a week everything hurt all the time and I spent most of my alone time crying and throwing down all the over the counter medication I could, but it wasn’t enough. So I started drinking. I would start the day with alcohol, drink mixed spirits with my cola during class, spent as much time as possible at the pub – even studied there most days, and drank last thing at night so I could sleep. Alcohol was the only thing that stopped the pain, it was the only way I could think of to keep functioning.

In Week 9 of the first term I caught a flu virus that was going around campus. Three days later the Halls Supervisor broke down my door to find me unconscious, having vomited, urinated, and defecated in my bed because the flu had wiped out my alcohol-filled immune system and drained my body so that I couldn’t even crawl to the bathroom. My phone had died and I couldn’t reach the charger. I couldn’t feed myself and had been hallucinating before I had passed out. It took an overnight stay in the hospital and an embarrassing trip on an ambulance gurney through the halls in front of everyone I knew, before I realised that I needed help. The doctors asked me why I had been drinking so much and I broke down telling them that there was so much pain and I just couldn’t face waking up every day to the relentless agony of it. They raised their eyebrows and said: “you know you can take pills for pain, right?” I was sent away with strict instructions not to drink, and a cocktail of pain meds instead.

The experience also resulted in a trip to pastoral care, where they registered me as a disabled student. They put me on to Disabled Students Allowance which meant I was given a dictaphone so that my friend could record a lecture if I wasn’t there, or so I wouldn’t have to write or carry a laptop to class. I was given an allowance to buy books, and given a printer, so I wouldn’t have to use the library to access what I needed. I was told me that I was under no compulsion to attend all my classes unlike the other students, and that my Disability Advisor would communicate all my requirements with departmental staff so I needn’t feel embarrassed. By the end of my degree I attended less than 60% of my classes.


2) fail to look into your accommodation
The requirements for my “disabled access” accommodation were the following: the closest halls to the teaching buildings, en-suite bathroom with bath and shower, laundrette in the building, ground floor room. Which sounds extremely suitable for the needs of a student with mobility complaints. But; whilst my room was ground floor it was also the furthest from the front door, and meant walking back on oneself the full length of the building in the opposite direction of where I needed to go to get to class in order to get out. When it came to spoon-saving, it was actually easier for me to climb out of my bedroom window than it was to walk all that distance. The window was also a better option most of the time because all the doors in the building, including my bedroom door, were fire-safety doors, which meant they were heavy as hell and on most days I wasn’t strong enough to pull mine open and get out of the room. It wasn’t until second term that I got an engineering student friend around to dismantle the mechanism above the door so that I could actually use it. As for the laundrette in the building – which was supposed to save me from carrying my laundry to another building – it was on the other side of the building, past the main door. On the second floor. There was no lift. With stairs my greatest and most hated of enemies when it came to pain, washing my clothes became a daunting and anxiety-ridden experience. Oh, and for the luxury of an en-suite and having the closest building to central campus, I had to pay the highest rent on campus. In other words, in order to be granted “accessible” living I had to pay over £120 a week for my room. There was no subsidy for disabled students.


3) be unaware of the full extent of your symptoms
This is a silly one, but after my first few nights I woke up every day with sore, black feet and had no idea why. I thought it must be from all the walking I was suddenly having to do. It wasn’t until a friend stayed over about Week 8 that they asked me why I’d been kicking the wall all night. Turns out I had Fidgety Leg Syndrome, and had been kicking the wall every single night in my sleep. I never knew this because at home I slept in a double bed in the middle of the room. We ended up having to drag the bed away from the wall and cramping up the space in my room so that I didn’t do myself any more damage. A trip to the doctors soon told me I had several fractures across the cuneiforms of both feet.
4) refuse to tell your close friends about your difficulties
Pretending that you can do everything, going clubbing every other night, spending the nights on friends floors, joining all the societies so that your weeks calendar is absolutely packed, is a sure fire way to get yourself burned out. They are all things that I did because I was embarrassed to say, “I can’t do that” or “I need to rest today”. I didn’t know what my condition was, I had never heard of it and learning about it was something I was not going to do because that would mean confronting the rest of my life. So how could I tell anyone else what I didn’t understand myself? I hadn’t learnt how to pace myself or how to manage my lifestyle effectively, and I didn’t want to be left out. As it turns out, my best friend from uni is still my best friend nearly ten years later – and telling him about my health was the best thing I ever did because his support has been instrumental in me feeling normal and living my life.


So, yeah, my First Year experience wasn’t great and the following two years also had their challenges. Living further from campus and having to walk and ride buses made my attendance levels even worse. I lived with my partner instead of uni friends because I couldn’t let anyone else see me – or worse “care” for me for the rest of my degree. But I will tell you now that you will get precisely nowhere if you don’t disclose your disability to your university. There is so much support for you out there, and if they don’t do what you need complain about it until you are blue in the face. I’m doing my Doctorate at a different university now, and they tell me that they are required to go above and beyond in order to accommodate disabled students needs: if 1 disabled student out of a lecture group of 100 needs the room to change, then the room will be changed.

Making new friends is scary and daunting, especially if you aren’t as gregarious as I am, but when you do make them – talk to them. They’re scared and have their own problems too – so share! If you are new to your condition, I can’t tell you to get over your denial – it is a normal part of coming to terms with your health – but think about taking a gap year before uni to get to grips with yourself before you take up the challenge of living on your own. Remember: you might be living on your own, but you are never alone. Talk. To family, to friends, to pastoral staff, to a doctor, to Nightline, to anyone. And whatever you do DON’T do what I did – and struggle through a wasted opportunity because you are too proud.


Shouldn’t we talk about: judgement within the disabled community? Tuesday, Aug 8 2017 

Dozens of articles on Chronic Illness support networks remind us that we are all aware of feeling judged by people outside of the disabled community. But we are less comfortable talking about the judgments exchanged by those of us within the community. Whilst having chronic illness often teaches us huge amounts of empathy, patience, and awareness of the relativity of pain and human endurance, it also teaches us a lot about darker feelings such as envy, and skepticism.

I am someone who actively confronts their limitations. For example, after a decade of denial and spiralling health I have quit: smoking, drinking, caffeine, and self-harming. Through therapy and self-awareness practices I have had help to overcome depression, suicidal tendency, and hypersexuality disorder. More recently I have taken steps to increase my fitness and physical capabilities with a lot of help from supportive friends, and good trainers. This even involved overcoming extreme hydrophobia. I have flown in the face of medical prediction by learning to drive, riding a motorbike, and not being wheelchair bound by my late thirties. These are the accomplishments I feel most proud of, as I feel empowered by doing everything in my capabilities to master my disability. But my approach to my health raises a wealth of negative attitudes both in myself, and in others.

  1. Skepticism

Strangers who doubt the extent or reality of my disability I can deal with. Many deniers will often be reduced to a mumbled apology when confronted with either an explanation of my conditions, or a flash of my blue badge. However, it is from those who are most well versed in illness through their own experiences – either personal, or via close loved ones – that I receive the worst form of judgement.

Many people I know who are ill have told me that my illness can’t be real because I can now do exercise (after medical support and a lot of extraneous suffering), or they look at me askance when I do my daily stretches and strengthening routines. Others tell me my prognosis cant have been all that dire if I am able to ride a motorbike. Or tell me I don’t need a wheelchair on my off days, if I can do sport activities on my on days. To me this is a lifelong experience which extends beyond my health; it often feels like those who cannot accomplish what you can will begrudge you your success. We are just as guilty of forgetting that people are individuals, their experiences of their health is individual, and what one person can accomplish despite their illness is not what another can.

But I am equally guilty of this judgement. I think we all are. I catch myself begrudging those who get priority for being wheelchair(bound) users, as I believe my pain – and therefore my need – to be more acute. I judge those who shy away from enhancing their physical capabilities, who I feel are too cowardly or set in their ways to strive for a better life. I forget that our experiences are unique, our pain, fear, and tolerances are all our own. I also sometimes doubt those who are able to raise children can really be that poorly – just as I berate others for judging my physical activities! In short, I judge people for failing to be able to reach my accomplishments, and judge still others for achieving things I could not hope to. This is as foul as what we experience from non-sufferers and we should all acknowledge our part in this, so that we can apologise for it, and improve our attitudes to each other.

2. Advice

We all turn to our fellow experiences for advice, especially with the minefield that is medication, but while I think it is great to share your experiences, it is never okay to recommend your approach to others. By all means tell them that your experience with pain killer x, antidepressant y, or alternative therapy z was positive, or negative; but never tell someone they should be doing one thing over another, or worse, tell them not to take anything altogether, simply because your experience was different. Your relationship with your drugs is something which should only ever be decided upon by you, and your doctor.

This extends to life advice as well. By all means share your experiences, your approaches, your hacks. These are invaluable, especially to the recently diagnosed. But do not tell others what they should be doing. “You should move to a bungalow so you don’t have to take stairs”; “you should use a shower chair/stair lift”; “you should cut your hair so that it is easier to keep it clean”; “you should not get upset about the cleanliness of your house”… The fact about stress is that it is not universal. You might be free from stress in a cluttered or untidy house, but the distress this causes another may exacerbate their condition/s. You might find great relief in using a shower chair or Stanna lift, but others may feel burning shame and a sense of surrender by doing the same.

The rule of thumb therefore, is that it is always okay to tell people about your experiences and your approaches. It is never okay to offer these solutions, however kindly intended, to a fellow sufferer.

3)  Judging healthy people

I have often laughed, and raged, with other poorly people about the ineptitudes of the able-bodied community (any-one else think there should be a better distinguishing word for typicals, like “cis”?). This all stems from jealousy: “if only I had so-and-so’s body, I wouldn’t waster it by over eating / not exercising / taking drugs”. How dare your healthy partner not only sleep soundly and regularly, but snore all the way through it and keep you awake – when you need your sleep so badly?! How easy your friends find it to raise children and have a job. Bast*ds! I have even caught myself grinding my teeth while watching children play because I am envious of their thoughtless ability to move so freely. It is easy to make these judgments, because the thought of being well is so compelling as to drive us quickly to jealousy and anger. But it is important to stop and reflect that maybe if you had never been ill you wouldn’t appreciate your body either. It is hypocritical to raise anger towards the physically abled who mock us for our limitations, when we mock them equally for their flippant attitude to their health.


These negative thoughts and emotions, and others like them, are perhaps more toxic when shared among the disabled community. Amongst able-bodied people ignorance accounts for a lot of their negative attitudes, but we do not have the luxury of that excuse. While our sense of outrage might be stronger when we compare ourselves to those we think are similar, so should our sense of empathy. This is something I know I need to learn. I know that my sympathy for suffering extends further to the otherwise able-bodied community who are temporarily ill – or whose diagnoses are so different to mine, like SEN conditions – than it does amongst those who share illnesses like mine. Perhaps it is because I am more protective of my condition when around fellow sufferers, or perhaps the stories about benefit fraudsters pique make me as opinionated as the next man.

But if I am going to continue to improve myself, and overcome my limitations, I should also learn to overcome my judgment and skepticism of others just as I hope they will overcome their judgments of me.




Why I have never felt discriminated against for being female or disabled. Tuesday, Feb 21 2017 

I love learning. I listen to a lot of TED talks, podcasts, radio lectures, and read a variety of articles from academic journals and websites. They span a whole range of subject matter from CRISPR to space archaeology. Amongst this vast array of topics I have noticed something. I have found that social and civic lectures commonly consist of passionate diatribes concerning diverse forms of discrimination. Discrimination on the grounds of gender, race, disability, and – less occasionally – income or class. Whilst I am absolutely sure that such inequalities do exist, and that it is fundamentally important that these matters are campaigned for in order to improve both policy and prejudice, I sometimes feel that the experience of discrimination should somehow be universal. In other words, some speakers and writers are so passionate and persistent in their speeches that I have begun to feel abnormal for not feeling that I have experienced discrimination despite the fact that I am a women and disabled!

Talks by both powerful and passionate women lay down mountains of evidence for gender discrimination, from every-day cat-calling to corporate glass ceilings. There is even a spattering now of male voices speaking up for women’s rights and female equality. The perseverance of these campaigners is admirable indeed, and I hope that one day their voices will no longer be needed when the sources of their suffering are stopped. There is just one thing, I have never experienced them, or if I have I certainly didn’t notice. Now the more condescending amongst you may throw your hands up and exasperate that it is precisely my failure to notice my lifelong oppression that provides evidence for male privilege. But I find such attitudes infuriating, as if I am not perceptive or intelligent enough to comprehend my own life experiences.

Now don’t get me wrong, it is not as if I have swanned through life with no unpleasant encounters with men. I was bullied by boys at school. I was sexually assaulted as both a teenager and a university student. And I endured more than two years of emotional abuse under the ego of a manipulative narcissist. But I don’t put these acts down to their gender – I put it down to who they are as people. Girls were just as spiteful, if not more, at both school and university, and grown women have scoffed at my assault and abuse and laid the blame at my feet. These are the facts of the world, they are life experiences, but they are not evidence of my disenfranchisement as a woman. I have never been overlooked for a job in favour of a man, I have never been paid less because I am a woman, and I while I have suffered from severe self-loathing: I have never felt ashamed by the “male-gaze”.

Maybe men don’t have the right to cat-call, or leer, at women who simply want to get from A to B without hassle. But I, for one, have known women to be far more predatory than men when it comes to gossiping about men’s looks and prowess. For example, a recent article I read seethed at the presentation of women in the popular Marvel and DC action hero series. Why are women clad in skin-tight leather with heaving cleavages? But do women not drool over Chris Hemsworth’s shining muscles or Downey Junior’s roguish good-looks? Harley Quinn in Suicide Squad wears cheek-hugging briefs for the entire film – shock! But Jared Leto is repeatedly topless throughout. I certainly don’t think the semi-naked shots of world-famous rugby players spattered over the internet are taken in order to encourage men into the sport… My point is not that women are not socially sexualised, objectified, and overlooked, they clearly are. But there is certainly more balance on this account than female spokespeople would have us believe (except for perhaps Hanna Rosin). Whatever your views on female oppression. My point is only that I cannot claim to have experienced it in my lifetime.


Disability discrimination is perhaps a less provocative topic. But my point remains the same. The benefits system in the UK is flawed to some extent, and there are bound to be errors in assessing peoples’ entitlements. This problem is compounded by the grossly exaggerated media coverage on benefit fraud. While I cannot account for other people – I applied for benefits because of my disability when I graduated university, and have had no problem with them over the past four years. I have never been denied work because of my health. If anything the majority of people I know have bent over backwards to accommodate me. When I considered a teacher-training placement but turned it down for a (less physically challenging) Masters, the school in question offered me my own office, my own classroom, and even suggested installing a specialist lift for me. This is not discrimination, this is kindness in action. I have been able to take long-distance degree programs, and been allocated specialist funds throughout my eight years in higher education – I have at all times been enabled by the institutions and government that people so despise for their unfairness.

In truth, the problems I have faced come from every-day people both on the street and in social circles. I have been taunted and blocked in when parking in disabled bays (despite having a blue badge) because my disabilities are unseen. I have been reported for benefit fraud because I began exercising at my consultant’s recommendation. I have been mocked and bullied by strangers and acquaintances for using disabled toilets and receiving benefits. This kind of discrimination stems from ignorance and inexperience. I have never had my health or benefits questioned by people who have witnessed the realities of my limitations and my symptoms. When these encounters do happen however I don’t consider myself a victim of circumstance, or a target for some kind of disability-phobic hatred. I don’t feel discriminated against because of my disability. I only feel that I am the recipient of other peoples’ ignorance. It is not my disability that is causing the abuse, it is only their ignorance. It is their problem, not mine.

To me, the very definition of discrimination is being considered less than equal because of a factor you cannot control. You cannot help your gender, your disability, or the factors of your upbringing. It is not my fault that I am female or disabled. But at the same time, despite what campaigners and advocates may insist, I personally have never felt discriminated against because of these factors. I don’t feel that my sexuality, or my disability has ever been a reason for my being either overlooked or targeted. My friend today said that perhaps this is because I don’t see myself as disadvantaged, or the victim of circumstance. I own my femininity and my disability. I never label, compartmentalise, or identify myself by one particular factor. I do not belong to a community of women, or a community of chronically ill people, any more that I belong to the postal workers union, or the Spice Girls fan club. I am not female and proud. I am not disabled and proud. I am ME and proud. Maybe it is my attitude, maybe I don’t feel the barbs of discrimination because I don’t overly identify myself with certain groups. Or maybe I don’t believe the world is out to get me, but instead that I am out to get the world.



Crucible* Thursday, Oct 13 2016 

It is as easy to list the events that occurred in my life during 2015, as it is impossible to truly explain what the year has meant for me.

A handful of days following a very merry new year my partner left me for a younger woman he’d been sleeping with for several months without my knowledge. I suffered. Recovered. I spent meaningful and exciting time with friends. I lost 3 stone. I fought hard and passionately for a stronger body and was swiftly rewarded. I quit smoking. Delivered conference papers in Scotland, London, and Birmingham. Got a tattoo. I met my beautiful new baby niece. Gave blood. Finished a year of therapy. I completed my Masters, writing a thesis in barely 2 months. I met a man unlike any I’d known before, who ‘slipped into my pocket with my car keys’, surprising me with his genuineness and gentility. A man who is my mirror inasmuch as we share deep similarities, and yet he is my true opposite in the best of ways. I finally began my PhD. Invented a convoluted and exciting plot for my novels during moving and exhilarating encounters with the muses. Redecorated my bedroom. I reignited my passion for motorbikes and summer adventures. Adopted a rabbit. I met, and lost, new and interesting people. I bought rugby and gig tickets for the first time. I lived what can honestly be described as a relatively normal year for me, within the broader tapestry of my life. Yet, in all these things, during these twelve long months, I changed. Something shifted in me, something intangible and inexplicable happened to me. Something so intensely profound that it has caused me to pause and reappraise almost everything I know. Something I so want to share with you, but I fear that I lack the words. I can only describe it alchemically, only explain in symbolically, I can only call it a ‘crucible’, a ‘Renaissance of life’. But the words cannot fully convey the majesty.

Whilst what I am about to describe to you is deeply personal, I feel compelled to share it simply because I believe that the reading of my transformative experience will give some of you hope, others insight, and still others comfort. Whilst I as yet do not understand why this has happened to me, or how many amongst you have shared this experience before, I do know in my heart that this is the most profound thing that will ever happen to me. And I hope that it may happen to you too. Especially those of you who have experienced traumatic, troubling, or tempestuous times. I feel that my enlightenment is proof that decades of depression and the deepest of darkness can, and will, lift from you when you least expect it to. I do not accept that I am the only person to have experienced this liberty, and I want you to know of it’s joy and it’s transcendency so that even in your deepest despair you can hope for a greater tomorrow.

Some of you may have already discovered the key to quitting bad habits. Smoking, drinking, weight gain, OCD’s. The key is very simple, and infinitely difficult. They key is to choose no. To choose not to let that habit be part of your life any more. A powerful, candid, declaration to the self is in my opinion the only real way to stop once and for all. But when you make this decision, and mean it to your very core, it does more than stop your craving for a cigarette, or a dependency on the numbing riposte of alcohol. It rewires your brain. It makes the very idea of something you once relied so heavily upon, abhorrent to you. Once you have decided no. Once you have relinquished the power something has over you, it releases you. For those of you who understand the power of ‘no’, I would like you to imagine the ramifications of what happens when you say ‘no’ to a lifetime mentality. When you turn your back on instinctive Stygian reactions to the hardships life throws your way. When you say ‘no’ to automatic victimization. When the very fundamentals of the only mental cortex you have ever known are drastically rewired, the fallout is monumental.

For me, this happened when I was delivered from an emotionally abusive, tumultuous, and unnecessarily dramatic three year relationship with a man I thought I would be with for ever, but while he never loved me, could not stand the thought of not owning me. Though friends and strangers tried to point out the horror I was putting myself through, just like an addiction to nicotine, I could not see the damage I was allowing myself to suffer. In hindsight, even had I wanted to break free, he would never have allowed it – considering that after leaving me the first time, he repeatedly broke into my house and tracked my phone to check on where I was. Even had I said ‘no’, even had I broken free of my feelings for him, I would never have been free from his feelings for me. Feelings which he would have pursued, relentlessly. Yet I cannot hate him, for the greatest gift this man ever gave me was walking away from me. The best thing that ever happened to us was for him to fall in love with someone else. If I could thank him for that, I would. Most sincerely. On it’s own, this emancipation was not enough of a paradigm shift to rewire my brain, but it was the start. It happened while I was in therapy, something I began after a psychiatric break. Something I never believed had the power to fix me, or cure me of my past. Surely no amount of talking can change your history, no matter how qualified the therapist. I am who I am because of my past, I thought, and that will never change.

I was right, of course, no amount of talking can transport you into your past and alter events. No one has the power to reach back and revise the course of your life, to stop people hurting you, to save you from your self. But what even a small amount of talking can do, is redesign how you let your past affect you now. It is not about understanding why something happened, or seeing it from someone else’s viewpoint, or processing something you have suppressed – as if the cure for psychological trauma is sunlight. It is about saying ‘no’. It is about looking at yourself, about ‘knowing thyself’, and not doing so with an automatic arrogance of rightness which stems from our deepest sense of self-protection, but with humility and culpability. Many of us who do practice our own psychoanalysis, or compulsively self-reflect do so from the perspective of unconscious self-defence, even when we are prone to guilt or self-victimisation. By this I mean that in my experience many people who struggle with depression, self-loathing, or chronic guilt are by nature extremely aware of their psyche and their history – and how the two have interacted throughout their life.  Yet while they may blame themselves for their experiences or mental state, a part of them also blames others. The mindset; ‘he sexually assaulted me because I was too weak’ or ‘because I asked for it’ while self-negating, also simultaneously blames another for the actual experience. It was ultimately his act which caused the damage, regardless of whether you blame yourself or not. ‘My parents wanted too much of me and I was too ashamed to say I couldn’t cope’, ‘people ignore me because I am not worthy of love’. These feelings blame both the self, and yet focus on the other. For many people with difficult lives, even if they ultimately blame themselves, other people are blamed as well. However much they may hate themselves, their situation is to some extent someone else’s fault. This subconscious admission compounds feelings of victimisation, of physical, emotional, moral, spiritual, and psychological weakness. Now, I believed that the point of psychotherapy was to analyse these feelings, to draw out their historical origins, and to process them in order to somehow let them go. But this is not what therapy did for me.

Though it was never verbally admitted or consciously explored, therapy encouraged me not to seek blame, or culpability, not to process my experiences, or somehow engage with them. It led me to look at myself from the outside. To see myself objectively for the first time, to let go of instinctual self-preservation and reflect honestly on how I felt about my life, my interactions and experiences with others, and ultimately to confront the elusive veil of self-interest which is weaved of the lies we tell ourselves every day. This veil of self-preservation, for many who wrestle with negative mental health, forms the patterns of our cerebral reactions. Our history hard-wires our brains to react in certain ways, with guilt for example, or shame, or weakness, causing a cycle of negative mental hygiene which in turn promotes more negative experiences. Not because the experiences themselves are inherently harmful – but because our perception of them is damaged. Each time something unexpected occurs, its ramifications are blown out of proportion by a brain hard-wired to expect disaster – even when the unexpected is manageable, or fixable the brain chooses to magnify the problems and spiral into victimisation.

This is a habit.

We choose to experience our lives negatively. Yes, this happens because a lot of negativity in the past forged this response. I am in no way denying the magnitude of torment some people truly endure. But perceiving future experiences as threats is a choice. In the same way that certain circumstances led you to smoke, and to rely on smoking, other circumstances led you to respond to unsettling experiences with guilt, shame, and vulnerability. By the same token, in the same way that you can deny your addictions and habits with a resounding ‘no’, I discovered that you can do the same for our unhealthy perceptions. On its own I don’t imagine that this is news to many people. Maybe this is the point of talking therapy and CBT. Maybe the true ability to do this is not something that can be taught or explained. But I have to tell you that it is real, it can happen to you, no matter what you have suffered, you can choose ‘no’ if you can embrace a humble self-awareness and burn away the veil of self-preservation which leads your mind to lie to you.

I want to tell you how this has changed me. I want to try and explain how going through this crucible, this surrendering of ego, even an ego you didn’t think you had, can create a new life for you. What I have to say is an amalgam of all cliches concerning enlightenment, it truly is as if a cloud has been lifted from your soul. As if you never really understood how the world works. It lets you see, and feel, people around you – people you have known all your life – for the first time. It lets you love yourself and others. It is not about forgiving – because there is no longer any blame. It is not about forgetting – because there is no longer any guilt to forget. There is only the truest sense of you. While I do not claim there will be no more hardship or struggles, I know absolutely that they will never be as destructive as they were before. Because you are stronger. People may already call you strong, or brave, for surviving the experiences of your past, but this is a different strength entirely. This is a strength born of humility and understanding, not a hardy resilience to suffering. This is a strength which truly liberates.

Let me explain some of the things I have learnt about this strength in the past two months. I recently experienced a major career-based shock which ordinarily would have led to a spiral of self-doubt and depression which would have had me crying, distressed for weeks, possibly self-harming, and contemplating suicide. But this time? I didn’t even cry. This time, I said ‘no’ to my typical cerebral response. I denied its presence entirely. The result of this? I was present and clear-minded enough to seek advice and resolution, and in doing so I received some of the sincerest and most moving compliments I have ever heard. In the crowd of life events this is now a typical thing for me, so much so that I didn’t even see the web of silver linings that was forming all around me until I caught myself smiling in the face of my chronic illness. When I was set back physically, for the first time I didn’t focus on the present pain, but waited impatiently for the trough to be over. For the past thirteen years I have hit my physical limitations with melancholy, hopelessness, and impotence. Now, I take it in my stride.

The last realisation I would like to share with you concerns my love for my family and friends. I was raised to believe strongly in compassion, self-sacrifice, and love. In my life I held to these bedrocks to the detriment of my mental and emotional health. I fell into an emotionally abusive relationship because I gave too much of myself to others. I resented those I loved because my love for them felt forced, not optional, but a symptom of my guilt. I drained compassion for myself and poured it into others. Giving so much of myself that there was no love left for me. I not only hated myself, but could not accept love from others. So while the end result, niceness to others, was positive, the means – emotional and mental self-harm – were extremely damaging. Now I am stronger, psychologically more resilient,yet  it has not made me colder or more self-interested. Instead it has given me a well of compassion, filled with a genuineness that astounds me, for the first time since I can remember I feel tear-wrenching, stomach churning love for my siblings and nieces. Instead of accepting them as mere collateral from birth, I see them as individual, strong, and loving people. People I want to get to know, people I genuinely love.

I never used to think it was possible to have the energy to love others with such richness, without balancing the deficit within myself. Now I find double the passion and more, for others, for my life, and for my future. Emerging from my crucible is not just the end of 12 years of depression, it is not just the lifting of a cloud, or a gift of insight. It is a purification of the soul, a new life, and the strongest foundation of a new beginning.

*This blog post has been moved from womeninecstasy.wordpress where it was published in 2016

An open letter* Thursday, Oct 13 2016 

An open letter to the incomprehensibly ignorant and vindictive ****er who thought they would do their public duty by reporting me for benefit fraud.

I would like you to imagine something for me. I would like you to imagine living every day in terror. Not the ‘what if it rains today?’ or ‘oh that mobile phone bill was a little high this month’ fear, but genuine terror. Terror of waking up every day to agonising pain. Terror of not being able to get up the stairs to use the bathroom.  Terror of never having somebody love you because you are disabled. Terror of not being able to drive, have children, experience the basic joys of life that others do. Terror of losing your house. Terror of losing your mind from pain and isolation. Then add to that mix the longing to not be ill, the jealousy of watching other people go about their lives with no comprehension as to how much of a gift their bodies truly are. Hating yourself for being jealous of your friends and loved ones who are able-bodied and free.

I was diagnosed with Fibromyalgia and Hypermobility Syndrome when I was a teenager. I was told that I would spend the rest of my life in chronic, widespread, pain and fatigue. That I would never get better. That there is no cure and no treatment.  What I wasn’t told is just how far-reaching the suffering is. I spent the first year in denial, and made myself so much worse – until I was hospitalised in a critical condition for a week. All my joints hurt, always, every day. My muscles ache every day. I suffer from migraines. Exhaustion. Fainting spells. Excruciating pain. The cold physically hurts me until I weep. In fact I spend the majority of my life asleep or crying because of the pain. But the pain I could deal with.

What I can’t deal with is the unbelievable intolerance and cruelty of other people. Do you know how hard it is to get a Blue Badge? I have one because my consultant had to fight my corner for me against ignorant service providers, but the very fact I have one implies that I damn well need one. What I don’t need is the judgement and verbal abuse from other people, whenever I use it, who clearly don’t believe that young people can be so ill. People like you. I am 26 and until recently I had never done the things everyone else does. I had never been abroad, never been to a zoo, never been on a plane. Because my body imposes limitations and risks on me that are sometimes immeasurable, sometimes incomprehensible. I was lucky to have someone who cared for me enough to help me do these things – someone who understood my condition enough to help me through the unplannable downsides of doing these things. You are lucky. You can do whatever you want, whenever you want, with no thought as to how many days in bed each activity will cost you, or how many hours of pain, or how many opiates you will need to get through it. You will never be left by people you love for having a disability which you do not want and cannot help.

You will never suffer the psychological harm of living in agony every single day. Of feeling guilty and useless. Of feeling worthless because you have to rely on the state when you would love nothing more than to provide for yourself. Of being told by other people that you look fine, that you cant possibly be ill, when they do not suffer inside the cage of their own bodies. My illnesses are LIFELONG, they are CHRONIC and they are INVISIBLE to people who do not spend every minute with me. Because I do not want to be ill I have to fight every time I leave the house to put a brave face on. When you see me you see opiates, layers of makeup, and energy supplements. You see someone who may get hyperactive in the company of others because they spend the majority of their time in mind-numbing isolation, alone with their pain. What you don’t see is the suffering afterwards. What you don’t see is the weeping, the necessary bed rest, the therapy, the endless doctors, consultants, psychiatrists.

May I suggest – if you are so civically minded – instead of wasting everyone’s time and much-needed energy and limited resources with your spiteful phone calls, that you volunteer to work with disabled people? Not that I’d wish to inflict your intolerant and bigoted company on people who suffer enough, but if nothing else you may educate yourself as to the severity of what other people suffer behind their brave appearances.

Finally, despite your intensely callous and despicably malevolent behaviour, I for one would never wish Fibromyalgia or Hypermobility Syndrome and the associated life-long pain, constraints, and depression on you – or anyone close to you. Because I have something you clearly lack at even the most fundamental level – compassion.

Yours etc.

A person braver than you could ever hope to be.

*This blog post has been moved from womeninecstasy.wordpress where it was posted in 2015

They can take my body but they cant take my freedom* Thursday, Oct 13 2016 

 FREEDOM! -  FREEDOM!  Braveheart

It might have taken 2 years, 3 instructors and 3 addresses, but I have passed my driving test first time. Hoorah! For many people this is some sort of life milestone for teenagers or an added tool on the C.V. to expand employment opportunities. But for people like me it is a psychological, physical, and hugely personal achievement. It has ramifications I cannot begin to know for both my psyche and my external life. Of course, passing the test itself would be little good without the car, and thanks to the generosity and love of my family that has manifested. But there was more to the test itself than may first appear.

At the age of 18 I was told by a Rheumatology Consultant that I would neither drive, nor have children, because of my health. It may have taken 6 years and various medications with plenty of support from my family, but I can drive. A manual car. Alone. With no support. So much for that prognosis, thank you doc! But before I could grow accustomed to the new found freedom, I was simultaneously confronted with a psychological shock concerning my child-bearing capabilities. Rendering the motoring accomplishment rather moot. Psychologists feel free to have a field day at this point.

It may have only been a few days but I have already come to think of my car as my legs. For the first time ever I have been able to go shopping alone and spend as long or little as I wanted traipsing the aisles. I have spent time browsing (in stores!) for a toga for a Classics Symposium I will be going to and getting to on my own. I have joined the local Leisure Centre to start swimming (another personal growth thing for a hydrophobe with a muscle complaint and fatigue issues). All this within days of having my own car outside my house. I’ve got to take things carefully of course, spending the evenings resting after an hour out and about, and it will take me a long time to get used to my car-based limitations.

Swimming was a shock. First time I have ever been to a pool alone and while all the staff were lovely I was shaking top to bottom after 15 minutes, my throat hurt like I’d been running (a sensation I have not been familiar with since cross-country running over a decade ago), and my stomach is still cramping. It is hard to tell what was the fear from being in the water alone, and what is exhaustion from the (admittedly pathetic) exercise, there could be some embarrassment factor in there as well. Still, at least the entire experience was free (bar the 20p for the locker). If I can at least master the shakes so I can get home, I might be able to go frequently enough to actually build up some sort of musculature, though the prospect is terrifying – not of having musculature but of having to swim to get it.

In summary, I have a new metallic body that allows me live a much more normal life, and compartmentalise my condition into a smaller box which is more of a consideration than a condemnation. I should see this as a fingers up to the negative prognosis given to me six years ago, and an encouragement that my life might not be as bleak as I foresaw. But it isn’t an instant fix, and has come to replace another physical and emotional crutch. I have yet to know how much more free I am, how free I really want to be, and more importantly who this car will make me now.

passed driving test

*This blog post has been imported from womeninecstasy.wordpress where it was posted in 2013.

I want to break free…* Thursday, Oct 13 2016 

I have come to realise this week that the dreadful misery I have been feeling is in part due to an on-going problem I have had for the past 6 years concerning my health. The problem has ended relationships, caused waves of extreme depression, and yet I always seem to forget about it or ignore it and so never really fixed it. I guess I felt I couldn’t fix it and would have to learn to live with it.

The problem is the amount my disabilities render me housebound. Today is the 5th April and I have not left the house on my own since the 27th February. That is not to say I haven’t left the house at all, because I have, thanks to friends and the OH. But I have not independently operated as my own person outside of my house in over five weeks. My health makes this hard because walking is extremely painful, where I live is very hilly and so to get to the main road/the nearest corner shop I have to climb a flight of very steep stairs, and when I say climb it is practically hands and knees. There is a train station about a 7 minute walk in the other direction but not only does it not go anywhere useful, it also means climbing back up the hill to my house when I get back. The problem with conditions like fibromyalgia compared to disabilities which leave people wheelchair bound (as scary and dreadful that may be) is that not only do you look well, so people assume you are and don’t offer you seats on buses etc., but also you are in pain all the time, and exercising causes more pain. So you might feel well on the walk to the shop, but you sure as hell don’t feel well on the walk back. Let alone if that walk back involves carrying any shopping (when a pint of milk is too heavy for you), or if you have walked around a shop for half an hour/done some sort of fitness class – even yoga.

So I stay in my house. Living alone, with only a feline for company things can get very isolated and very depressing very quickly. There is only so much house-work and studying you can do when you haven’t got food in, or you’re out of milk for tea (everyone knows you cant write essays without tea), or you’re anxiously waiting for the postman to arrive just so you can see another human being and disrupt the monotony briefly by opening mail. I always feel momentarily sad when there is no mail, and I never understood why until now. That is not to say I do not get help from friends and the OH, of course I do, and I am so grateful for it. But in a way it only highlights everything I feel I cant do for myself. And there is nothing worse than being left, or dropped off home, for another indiscriminate amount of time, could be days, completely alone. The side effect of this of course is that when I do spend time with people, I never shut up because I have been socially deprived for days or weeks and I get very excitable and chatty which a) makes everything seem all right to other people, b) enhances the feeling of solitude afterwards, and most of all c) hurts my feelings when people tell me to shut up because they have been out at work and want to relax. Of course they do, that is entirely normal and not to be begrudged. But I have been on my own and sometimes I would give anything to spend a day in an office full of people.

Living alone was a huge step for me. Fears about my health and coping with the house and what happens when I faint or cant get out of bed etc. I have coped with all of that marvellously and the house is generally clean most of the time (because I have nothing better to do). But I didn’t entirely expect the isolation I guess. The main problem is that no one else is responsible for ‘keeping me entertained’ or visiting me/spending time with me – and nor should they be. I don’t want to feel like a charity case or that my friends feel forced to see me when they don’t want to, out of a feeling of guilt. But that doesn’t mean I don’t suffer with it, and it doesn’t make things any better. Even at home I have very few people to talk to, my mother on the phone (but then I can’t afford the bill!) or the odd person on facebook, but that is about it. There is no human contact, just me in silence every minute of every day. It makes me angry when people say, ‘oh I would love a week to myself like that’. Yes, of course you would, because you spend every day with people, free to go out and free to stay in. Most new mothers who feel this isolation have their partners at night, or their families or they can drive, or have a night out when they can get a babysitter. It isn’t imposed on you for the foreseeable future.

So, I’m going to take up driving lessons again, though I can barely afford it and it will use up any spare money I have. Even if I cant afford a car any time soon , I will be able to leave the house, do something useful, and talk to at least one other person. It’s a start, it’s something I can do for myself and most of all, something that lets me leave the house, even if it is just for an hour a week. It’s better than once every three months!

*This blog post was imported from womeninecstasy.wordpress where it was posted in 2012