All posts by littlewomanbigwords

About littlewomanbigwords

Cambridge postgrad figuring out some thinks. Blogging on disability, mental health & growing up little.

Book: ‘A Little Life’

Every so often, a book comes along which reflects its reader so powerfully, so poignantly, that the reader in question not only recognises that reflection, but is inspired to change. It’s an experience which I myself have felt only a handful of times: aged eighteen, reading The Journals of Sylvia Plath, a collection which opens with a depressed eighteen-year-old Plath feeling undeserving of her place at college; later, at university, reading the life of the disenchanted Cambridge student in Jacob’s Room; later still, recovering from a major overdose, reading Bao Ninh’s account of PTSD in The Sorrow of War. All these novels held a special resonance with me, but all were nevertheless written about subjects which themselves feature regularly in literature: depression; trauma; youth.

Throughout the eight-hundred-year-old canon of English literature, few novels feature physical disability. Even fewer allow the disabled character to take centre stage. The first novel I’ve ever read in which the disabled character is not conveniently stored in an attic bedroom or miraculously ‘cured’ by a heroic protagonist, A Little Life brought me to tears.

The antithesis of the meek disabled sidekick, or the ‘inspirational’ disabled hero of Facebook memes, Jude does not accept disability without a fight. It does not ‘make him who he is’; his scars are not ‘tattoos with a story’. Like many people living with degenerative disabilities, he stubbornly clings to the idea of walking long after it has ceased to be feasible. He pushes his body further than it can go and experiences agonising pain as a result, and his friends despair because they don’t understand why he wouldn’t just use a wheelchair; why he wouldn’t just ‘take painkillers’. Sometimes he can walk, and sometimes he has to crawl from his bed to the bathroom to vomit out of sheer pain, and the only explanation for this is that he must, at one point, have ‘overdone’ it; he tried to do what everyone around him does so easily, and now he pays the price. As petty as it may seem, it is so, so frustrating to hear able-bodied friends suggest you ought to know better than to expect the same things from your own body that they expect from theirs.

Jude remembers running. He remembers how it felt to walk. He hates his scars because they remind him of traumas he never deserved, traumas that nobody ever deserves. Later, having accepted their essential uselessness, Jude becomes apathetic towards his legs; ‘the bastards’, Andy calls them, with the gallows-humour so commonly adopted by those whose brains are carried by bodies which refuse to play ball.

And yet the gallows-humour is a thin disguise for a brutal fact: Jude’s disability hurts. I’ve written about pain before, because I’ve always felt it needs to be written about: chronic pain is isolating, and lonely, and sometimes it just makes life really fucking hard. As much as we cripples need role models who win Paralympic medals and climb mountains and make astonishing comebacks from pioneering new surgeries, sometimes we also need to hear about those who wake up every morning and try to work out, without moving a muscle, the state in which their body is going to make it out of bed today.

Narratively, A Little Life is a little lazy; as a friend of mine put it, ‘the same bleak things happen over and over again for six hundred pages’. Everything that could possibly go wrong goes as wrong as it could possibly go, pushing every form of human pain to such an extreme that critics have labelled the novel ‘abuse porn’.

Cynicism aside, however, Yanagihara’s writing is beautiful, and his descriptions of life inside a failing body, of excruciating pain, are sheer and raw and breath-taking in their accuracy. I want all my doctors to read it. I want all of anyone’s doctors to read it. A passage:

‘He felt in those minutes his body’s treason, how sometimes the central, tedious struggle in his life was his unwillingness to accept that he would be betrayed by it again and again, that he could expect nothing from it and yet had to keep maintaining it. So much time, his and Andy’s, was spent trying to repair something unfixable, something that should have wound up in charred bits on a slag heap years ago. And for what? His mind, he supposed. But there was – as Andy might have said – something incredibly arrogant about that, as if he was saving a jalopy because he had a sentimental attachment to its sound system.’

Yanagihara writes about things which are difficult and upsetting, and many of his readers got upset about that. Here’s the thing: difficult, upsetting things happen. It’s hard being disabled, or in pain, or mentally ill; it’s hard to recover from abuse, or violence, or trauma; it’s hard to stay alive for the sake of those around you when every bone in your body wants to call it quits. But knowing you’re not alone – knowing someone else knows how you feel, understand the complexities of your little life – well, maybe that makes it a little less hard.

Literature has the capacity to teach us about the unfamiliar, and that’s important. And yet, perhaps just as important is its capacity to put into words those things we already know.

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On Grief: Remembering Lauren

Nine years ago today, my childhood friend Lauren passed away from cancer. Last night, sleepily browsing Facebook and not thinking of the date, I noticed that her mum had posted a photograph of Lauren on the Facebook page set up in her memory. Catching myself by surprise, I burst into tears.

Grief is funny like that. It lies dormant for years, held safely at bay, and then it bursts back out again. So, for Lauren, did cancer.

To this day, Lauren remains the closest thing I’ve ever had to a big sister. She taught me about boobs and bras and boys, how to use sanitary towels and why it is sometimes important to eat ice cream even if it’s raining. She took me shopping, slipped me chewing gum and took me on lengthy walks with a neighbour’s Yorkshire terrier on which, despite never going very far, we would somehow invariably get lost. We sang a lot. When I started secondary school, she was forever popping up in unexpected places to make sure I was ok, cuffing me into bear hugs. We shared picnics and playtimes, and I loved her in that way you love someone who has never not been there.

Cancer was cruel to Lauren. It stripped her bare. The very last time I saw her, I was terrified; she was thin, weak and bowed by excruciating pain. I didn’t know what to say. I still simply couldn’t believe that she wouldn’t get better. That I allowed cancer to cloud my vision that day remains the single greatest regret of my life.

They say it takes a village to raise a child, but in Lauren’s case it was very much the child who raised the village. In the small, close-knit community in which we grew up, she played a huge part, and I think she taught everyone she touched some very important lessons. She taught me more than I ever wanted to know about dying, but she taught me even more about living. In her sixteen years, Lauren did an awful lot of living.

Lauren liked pink – she wore pink to her prom, and we wore pink to her funeral – but when I think of her, I don’t think of pink. I think of this pair of multi-coloured, platform-heeled flip-flops she used to wear to choir practice. She was bigger than words, bigger than one colour, bigger than life itself.

And I guess that’s why it’s ok for grief to keep coming back, every once in a while. It reminds us of those things we never want to forget.

On Assisted Dying: Why Suicide Should Never Be Okay

Where do I stand on doctor-assisted suicide? Until Friday, I really didn’t know. But on Friday morning, armed with a natty camera, I was dispatched to Woolwich to take photos of an advertisement produced and delivered by my company on behalf of The Economist. It’s a digital billboard playing a long video of a hospital ceiling, followed by the words, ‘Could you live a life like this? Why doctor-assisted suicide should be legal.’

Sitting in the sunshine, snapping away and thinking about my plans for the weekend, I began to wonder how exactly I felt about the message I was photographing. And then it occurred to me: what happens if we take away the word ‘assisted’? How is it that, one day after ‘World Suicide Prevention Day’, the British government was fiercely debating whether suicide is, in fact, okay?

The crucial difference is that assisted suicide is largely reserved for the severely ill or disabled. Suicide is to be prevented, but only if you’re ‘well’.

I’m disabled and have a long history of suicidal thoughts and behaviours; when I’m mentally unwell, assisted suicide strikes me as perfectly rational. Although, wheelchair aside, I’m lucky enough to be active and articulate, I also live with chronic pain, which is one of the major causes of my depression. When I’m mentally well, although I’m still in pain, I don’t want to die. Yet were my physical condition to be significantly worse, there are doctors in the world who, instead of referring me to a psychiatrist for drugs or therapy, might respond to those thoughts of suicide by actually helping me to end my own life.

Let’s get one thing clear: it’s not disability that makes me want to die, it’s depression, which is partly caused by pain. So why, instead of focusing our efforts on relieving that pain, or curing that depression, or solving whatever other issues lead a severely ill or disabled person to thoughts of suicide, does the pro-euthanasia movement leap straight to the morbid conclusion?

Leicester-Sq

According to the able-bodied society in which we live, severe disability one of the worst things that can happen to a person. Pregnant women frequently say they don’t mind how their baby turns out, as long as it’s healthy. The able-bodied regularly turn to the disabled and comment on how brave we are; ‘I couldn’t do it if I were you.’ (Newsflash: disability doesn’t happen only to a select group of people born with an innate ability to deal with it. It happens, and you deal with it however you can.)

The able-bodied, pro-euthanasia world tells itself that a life lived with severe illness or disability is not a life worth living. They’ve recently coined the hashtag-friendly catchphrase ‘right to die’; ‘death is a human right!’ they exclaim. And yes, I’m aware that there are sick and disabled people at the forefront of the pro-euthanasia campaign, but these are the same people who have been let down by clinical inability to alleviate their symptoms and their feelings of hopelessness.

Until my first suicide attempt, none of my doctors had ever suggested that I might need some form of counselling or psychological therapy to help with the impact of my disability. We need to adopt a more holistic approach to illness, managing not only its physical but also its psychological effects. We need better pain relief, better technology, better care. We need to stamp out the idea that some lives are not worth living, and that suicide is sometimes okay.

Earlier this year, battling through my most severe depressive episode to date, I would have jumped at the chance for an easy way out. Were I to be a more significantly disabled person living in a country where assisted suicide was legal, that chance would have been on the cards. The thing is, I got better. Although it might take months or years each time, I always do.

On Risk: Leaving for Vietnam

(This is my quickest blog post ever. Excuse syntax errors.)

For as long as I can remember, going backpacking has been my number one pipe dream. Since childhood, I have dreamt of my grown-up self – lean, tanned and inexplicably able-bodied – travelling solo across exotic countries, diving into oceans, hitch-hiking in dusty pick-up trucks across countries I’ve never even heard of.

Yet my life has largely been defined by cautiousness. I have poor balance, and if I fall over I’ll almost certainly end up in plaster for six weeks; I am, I think quite reasonably, careful about every step I take, every crack in the pavement or step on a staircase. I never lift anything which I think might be heavier than I can manage. Whether consciously or unconsciously, I monitor every movement I make which might break my body.

When I arrived at university, I took risks. I walked further than I ever had done before. I went out dancing in crowded clubs. I walked on cobbles. Once, I even ran (shoutout to Somil for holding my hand all the way around Cripps court in case I tripped). The risks didn’t pay off: my legs began to crumble, and I now use a wheelchair almost all the time. By the end of my degree, those dreams of travelling seemed further away than ever.

I’m not sure exactly what changed, or when, but in February this year I decided that I wanted to go to Vietnam, and somehow I convinced myself that this was something I might actually be able to do. Vietnam is not a wheelchair accessible country. I don’t know any disabled people who have been there, and can only find two accounts of wheelchair users visiting the country online. I don’t know what their hospitals are like. I don’t speak the language. I don’t know how to say ‘brittle bones’ in Vietnamese.

What I do have is a broad-shouldered, nearly-six-foot-tall brother who has been looking after his ‘big’ sister pretty much since the day he learned to walk. I am so grateful for all the people and events which have given me the confidence to make this trip, and above all I am so grateful for the brother who will help me get there. In Vietnam I will be completely dependent on him to carry both me and our bag, and to push and carry my wheelchair. I’m not sure whether he’s brave or mad, but I know there’s nobody I trust more.

I don’t expect the next few weeks to be dreamily easy, but I have everything crossed that nothing goes disastrously, and that we are taking a risk which might just pay off.

I won’t be able to update my blog in Vietnam, but I will write about my trip once I’m back for other wheelchair users who might want to make a similar trip!

The Morning After the Night Before: General Election 2015

This piece was originally written for and published in student newspaper Varsity.

I am sitting in my college ‘buttery’ (canteen) the day after the general election, giving an exasperated monologue on what the next five years will mean in terms of welfare.

“They’re forcing people who can’t work into work, and at the same time capping Access to Work so that disabled people who want to work can’t even work anyway!”

“Well,” says the Tory voter sitting opposite, “They can just work from home.”

It’s a comment which says a lot about what five years of largely Conservative government has done to widespread attitudes towards the ill and disabled. In and amongst the celebrity exposes and comment pieces about Josie Cunningham’s boobs, articles about fraudulent Disability Living Allowance (DLA) claimants being ‘caught’ playing golf or walking to the shops feature so regularly in the Daily Mail that you’d be forgiven for thinking every other disabled person is secretly running marathons in their back garden. Quite aside from the fact that not all disabilities affect a person’s physical mobility, and that many mobility-impaired people are still occasionally able to walk, the regularity with which these articles appear represents a gross overestimation. In fact, DLA fraud is somewhere between <0.1-0.5%, depending on which reports you read. The only benefit with a lower fraud rate is Incapacity Benefit. Who claims incapacity benefit? Oh, yes: the sick and disabled.

‘Bye ‘bye benefits!

The British media is feeding the public a lie, and it’s one which has serious social ramifications. Disability hate crime is on the rise. Throwaway comments about so-called ‘benefit scroungers’ are becoming increasingly socially acceptable. Maybe it’s just because I’m growing up, but in the past few years I have experienced many more strangers making unpleasant comments when I dare to stand up in public than I used to. Back in 2009, standing to use an escalator or walk down a flight of stairs rarely drew anything other than a smile or an offer of assistance. Now, whilst on days when I can’t stand I still receive almost ubiquitous kindness and offers of help, the minute I stand up I am ignored, frowned upon or even verbally abused.

As a lady I met on a train the other day told me, ‘If, on a good day, I’ve managed to walk down the street unaided, that’s a major achievement. I feel like I deserve congratulation. Instead, I am gossiped about, accused of not needing a wheelchair, and have even been reported for benefit fraud.’ Indeed, despite such low fraud figures, the second result on google when I type in ‘dla fraud’ is ‘dla fraud hotline’.

In 2012, Iain Duncan-Smith told the Telegraph that, over the past ‘few’ years, DLA claimants had risen by 30%. That’s not because there was more fraud. DLA was only introduced in 1992; as more people learn about the benefit, more people claim it (I only began claiming DLA in 2009). The other major factor is that, as medicine improves, higher numbers of disabled children are living into adulthood. Disabled children have begun this awkward habit of surviving. What a crime.

Whilst we might be alive, not all of us are capable of work. There are many people with physical and/or mental or intellectual disabilities and illnesses so severe that a ‘good’ day is one where you make it out of bed. There are many people with fluctuating disabilities and illnesses who might be capable of working on a ‘good’ day, but for whom good days are rare and unpredictable. What employer would employ someone who will only work two days a fortnight, who won’t know if they can work until that morning, and who might leave at any point for a lie-down?

I personally won’t be affected by the cuts. The privilege of a Cambridge education and the sort of intelligence which society values means I have a job lined up for when I graduate, in an office which is already sufficiently accessible that I won’t need Access to Work in order to make adaptations. I will be able to afford rent, so I won’t need housing benefit. The job is in London, so I will be able to travel on accessible buses without needing an Access to Work travel package, or a Motability funded car. Although I am a full-time wheelchair user, I do not have communication problems and don’t need a carer, so I don’t need Access to Work-funded communication equipment, Carer’s Allowance, or an Independent Living Fund to pay for 24 hour care.

That’s lucky, because all of the benefits listed above have either already been cut, or are set to be capped or cut in the near future.

During the Welfare Reform of the past five years, disabled people have been hit nine times harder than the non-disabled. Over the next five, it is once again going to be those most in need of help who are the hardest hit. If you and your family are able to work, lucky you. That doesn’t give you the privilege to criticise or judge those who can’t.

On Taking a Break (not literally)

I didn’t manage one blog post a week. I didn’t even manage one a month. Turns out, my mental health had to get a whole lot worse before it started getting better. In the hour between the last day of February and the first day of March, I swallowed the entire, extensive contents of my medical box, wrote a note to friends and family, and lay down to die.

Skipping the gory details, six days later, I am sitting in my eating disorder therapist’s office, still unable to think clearly, see straight, smell anything except a strange, lingering chemical stench, stand upright, make decisions or form complete sentences. Poison has reduced my body to a senseless shell. ‘On the plus side,’ says my wonderful, ever-optimistic therapist, ‘we know this is rock bottom. The only way is up.’

One of the difficulties of living with a chronic illness is knowing when to give yourself a break. Where an able-bodied person might take a couple of weeks off after breaking a leg, when you’re breaking bones at a rate of five or six a year, taking time off for each one is simply unfeasible. Like many people with a physical disability, sometimes the only way to cope is to take a ‘mind over matter’ approach: as long as my mind is working okay, my body can drag itself along behind, regardless of whatever state it might have got itself into. Which is fine, until it’s your mind that has broken.

During the three years of my undergraduate degree, I broke sixteen bones, and only missed one essay (I handed in a plan instead.) That wasn’t bravado, but necessity; had I taken a week off for each break, I would have missed 15-30 essays, and an equal number of supervisions. Two weeks before the deadline for my second piece of MPhil coursework, still unable to process information or read text without crying, I requested a deadline extension. A fortnight’s extension was generously granted, no questions asked, but I was left feeling bereft. My ability to ‘power through’ physical difficulties is something on which I pride myself; accepting that my mind simply couldn’t keep up felt like admitting defeat.

Why, when and how mental illness rears its ugly head is still, for the most part, a mystery. I know that my family history makes me more susceptible to mental illness, and that chronic pain is often linked to depression. Going through my ‘life timeline’ as part of CBT (cognitive behavioural therapy), my therapist has identified a number of events as ‘major’ or ‘traumatic’, and continually asks how I ‘dealt’ with them. Perhaps if I’d spent a little longer ‘dealing’ with things, I wouldn’t be in the mess I’m in now. Then again, perhaps if I’d spent a little longer dwelling on the things I don’t like to think about, I’d have gone loopy a long time ago.

I’m still learning to find the right balance between giving myself enough time ‘off’ to stay well and making sure I’m not just being lazy. The good news is things are, as predicted, on the up. I completed and passed my coursework. I had the time of my life abseiling, zip-wiring, clay-pigeon shooting and learning archery at the Brittle Bone Society’s ‘VOICE’ youth event at the Calvert Trust in Kielder. Since January, I have gained over 10% of my body weight, and am four kilos away from reaching a ‘healthy weight’. I spoke to an audience of over a hundred people at the Cambridge Rare Disease Network launch event. I recently took up wheelchair racing, which is proving hugely beneficial for both mind and body. This is the first time I have ever participated in disabled sport, ergo this is the first sport I have ever been kind of good at. Training sessions are hilarious, hard work and incredibly empowering, and have instantly become the highlight of my week.

My family and friends are still getting over the events of February and March. My mum still answers the phone with a panicked ‘are you alright?!’ constantly anticipating the worst. This was my third major suicide attempt, and each one has cost me friendships. The people I love the most in the world are the people I have hurt the most, and it’s a hurt I can never make up for. But here I am still going, still reading, writing and thinking, still plugging away at this poor neglected blog. I got better. I always do.

New Year, New Me?

Number three on my extensive list of New Year’s Resolutions was, in bold, no-nonsense letters, ‘Write blog WEEKLY. No excuses.’ My two-term stint of writing for the Cambridge Tab over, (you can find my Tab columns by googling ‘Cripple in Cambridge’), returning to my neglected blog seemed a good way both to maintain my writing and to cure the narcissistic desire to tell as many people as possible all my little thinks.

I’m good at making resolutions. Whether it’s a boldly scrawled New Year’s list, a neatly scripted Sylvia Plath-style page of ambitions for a new academic year, a drunkenly tapped out iPhone ‘note’ of more productive uses of time than yet another Sunday night Life, or simply a Monday morning post-it note, I have a real talent for planning personal makeovers.

This is the third week of 2015, and these are my first words. As it happened, the dawn of the New Year came slap bang in the middle of a fairly severe episode of mental illness. Thus far in 2015, most of my energy has been devoted to getting out of bed.

The fact is, when your physical and/or mental health isn’t quite up to scratch, resolutions aren’t all that helpful. It’s all very well resolving to dedicate summer 2012 to a regular programme of physiotherapy, but come September’s broken ankle, you’re back to square one. It’s all very well promising to be happier, but sometimes that’s just not something over which we have control.

The number of people in the OI community whom I know also to suffer from mental illness is high. Whilst I’m no psychiatrist, the connection between a body which, however hard you try to fix it, will break around you without warning, and a mind which sometimes gets worn out, doesn’t seem so hard to draw. Sometimes, no matter how rigorously we do our exercises, or how religiously we take our pills, our bodies and minds can let us down.

This year, for the first time in a while, I did not resolve to ‘get fit and healthy’. I resolved to work towards my own picture of health, whatever that might look like. If there’s a cast and a couple of grey days in there, that’s ok. And if, a year on, I still feel a long way off, that’s ok too.

And, whether my next blog is in a week or a month, I resolve to make it a whole lot less soppy 😛

Happy New Year xxx

Wishbone Day: Because Awareness Makes a Difference!

Yellow doesn’t suit me. As a child, I had a pale yellow hand-me-down sundress which, conscious of how awful I looked in it, I wore solely to spite my mother. Vanity having surpassed mischief, I’ve rarely worn yellow since. However, tomorrow I will make an exception to the rule. On 6th May, I wear yellow as part of Wishbone Day, an international day of awareness of brittle bones.

Brittle bones, or osteogenesis imperfecta (OI), is a genetic collagen disorder whose most commonly recognised symptom is that it makes bones particularly fragile and prone to fracture. This, however, is a bit of a simplification. Collagen, a doctor once explained to me, is the ‘scaffolding’ of the body, essential for the structure of all muscles, ligaments and tissues. This means that any part of the OI body can be affected, causing a wide range of conditions varying from chronic dislocation and scoliosis to hearing loss and respiratory problems. Living with OI is not dissimilar to travelling around London during a Tube strike: carriage is slow, unreliable and prone to stopping unexpectedly without reasonable explanation.

So, why is it important that you know this? Because awareness makes a difference.

OI is a very rare condition, affecting approximately 1 in 15,000 people in the UK. This statistic covers a wide range of types and severities, from Type I, which can be so mild it is never diagnosed, to Type II, which is lethal. Some of us can run. Some of us can’t stand at all. The majority of doctors (let alone council staff, social workers and benefits advisers), do not understand OI, and the consequences of this lack of knowledge can be devastating. It is mildly irritating when a new GP, looking through my notes, comments, ‘ooh, osteogenesis imperfecta, eh? So, what’s that?’ It is annoying when A&E doctors fail to spot fractures until weeks after the injury, because my x-rays are difficult to read and the surrounding tissue rarely swells or bruises. It can be incredibly dangerous when a person with OI is given incorrect treatment by doctors who simply do not understand how our unique bodies work.

But I cannot imagine what it must feel like to have your child taken away from you because its bones keep breaking without explanation and nobody has worked out why. This is the tragic reality for many families of OI children, whose injuries are assumed to be evidence of abuse and who are often put up for adoption. Even if OI is later diagnosed, some parents will struggle for years to regain custody of their own children, and to have their names cleared. In some cases, parents will never get their children back at all.

Living with OI is never going to be easy. Just yesterday, my mum (who also has OI but hadn’t broken anything in years,) fell over and smashed her left arm into pieces. She is currently awaiting surgery. It is unclear whether she will be able to use her left hand again. Until scientists come up with a cure for OI, incidents like this are unfortunately not unusual. In the meantime, it’s not just up to the doctors. From teachers, to shop assistants, to the kind strangers who helped my mum yesterday, a little awareness at every level and in every situation would make a huge difference to the lives of those affected by OI. That’s why Wishbone Day isn’t about raising money. It’s about wearing yellow, and celebrating the diversity of the nutty but fabulous OI community, and telling as many people as possible along the way. Please wear yellow tomorrow, and please feel free to share this post (or any other Wishbone Day paraphernalia!) as widely as you can. Because awareness makes a difference.

So Whose Fault Is This, Anyway?

Waiting outside Addenbrooke’s hospital on Tuesday, after yet another metabolic bone specialist had been unable to explain the excruciating pain in my previously ‘good’ ankle, it was hard not to want somebody to blame. The latest specialist had been kind and honest, but still I blamed her for not being able to help. If only she had known what was wrong, there would, I was sure, have been some treatment, cast or surgery which could have fixed me. So I blamed her, in the same way that I so often blame my back pain on my spinal surgeon, or my leg pain on the various doctors who, two years ago, did not spot a severely stress-fractured talus before it was too late.

The objective truth is that I have a rare bone condition which, due in part to its coincidence with other medical conditions, is currently presenting itself in a very unusual way. Osteopenia (low bone density) means my x-rays are difficult to read at the best of times, let alone when I have no clear break, only two unidentifiable white patches around the ankle which match the area of my pain. As much as I wish there was a simple answer, a definite solution, to each of my weird and wonderful complaints, the fact is that there was no clause in Tuesday’s specialist’s medical training which taught her to deal with whatever I’ve got going on – and nor could there have been. My body has spent much of its short life surprising experts by playing unexpected tricks at unexpected times. It is not the specialist’s fault that I will now spend weeks waiting for a CT scan, followed by another few weeks’ wait to get the results. Realistically, even when I do know what the problem is, there is unlikely to be a clear, easy solution.

None of this is my specialist’s fault and, until recently, I would have claimed that none of it was my fault, either. However, Tuesday’s appointment also revealed another home truth which I had been attempting to deny.

Since the age of nine, I have lived with anorexia, in a variety of forms and severities. I’ve had phases of eating almost normally, pushing guilty thoughts to the back of my mind, and I’ve had phases of living on two or three meals a week, spending days in total starvation. Twelve years on, my Eating Disorders Unit have teamed up with my bone specialist. Noting my weight gains and losses in correspondence with my Dexa (bone) scan, Tuesday’s specialist declared that there was no doubt in her mind that my current fracture cycle is a direct result not only of osteogenesis imperfecta, but also of prolonged malnutrition. My legs are no longer strong enough to walk on, and I’ve almost certainly done this to myself.

The news was hardly a surprise. For years, doctors have told me that my eating patterns would ultimately have a serious impact on my already brittle bones. From an anorexic perspective, convinced food was for the weak and that anyone who thought it a necessity was a fool, this was an easy claim to dismiss. Now, the only long-term medical prediction I’ve ever really been given has come painfully true.

It’s difficult when there’s nobody to blame. It’s even more difficult when the only person who deserves blame is yourself. Ironically, my anorexia is rooted in the desire to control my uncontrollable body; when my body has been particularly painful, the anorexia has worsened. I know this ought to be a wake-up call to put weight on, but I am torn between the desire to get better, and the illogical yet total conviction that everything would be better, if only I was thin.

I have been in charge of my own healthcare for a long time, and much of the past four years has been spent researching and organising referrals to the best specialists I can find. It is only now that I am beginning to accept that, with the best will in the world, even the greatest experts with the most cutting-edge treatments cannot ‘fix’ me. It’s not enough to turn up to every appointment and take every drug. Health starts from the inside out. I was born with a body which doesn’t work like it should, and it’s up to me what I do with it.

Let me tell you, it’s a lot easier said than done.

Let’s Talk About Pain

I know that, pain aside, I am incredibly fortunate in almost every other respect, and that I could be a lot worse off. I also believe that chronic pain is widely misunderstood. In the name of increasing understanding, this got a bit whiny; please excuse me.

What’s the first thing you think of when you wake up?

A close friend asked me this a few weeks ago. I chuckled a bit, and began to mumble something inane, when I stopped. This was a close friend. Why couldn’t I be honest?

‘It sounds a bit depressing,’ I said, ‘but pain. I think of pain.’

I live with chronic pain and, time spent under the influence of drugs or alcohol aside, have done so for as long as I can remember. Call me naïve, but until the age of eleven or twelve I genuinely believed that this was the case for everyone, and that my own pain was just a bit worse than other people’s.  My pain is located in my legs, feet and back, and fluctuates in severity from a nagging ache to crippling agony. On a good day, I barely think about it. On a bad day, I can think of nothing else. Sometimes, a bad episode is self-inflicted; I might have walked too far, or slept in an odd position, or done too much exercise. More usually, it is spontaneous. On any given day, the severity of my pain dictates almost every decision I make, from the clothes and shoes I wear to the places I go. Despite this, chronic pain is something I rarely discuss except when amongst close friends and family. I consider myself a pretty open person, happily broadcasting to the world my latest fracture or diagnosis. But chronic pain is different.

In my experience, discussion of chronic pain will generally provoke three forms of response. The first is a frustrating attempt at empathy; with all due respect, claiming you know how I feel because you once broke a toe is a bit like me claiming to know what it’s like to be blind because I once wore a blindfold. Even more frustrating is the second form of response: ‘there must be a solution, you just haven’t looked hard enough.’ A taxi driver once told me he was convinced I would be cured of all pain if only I tried googling my complaints. A friend of mine, (worryingly, a medical student,) was incredulous as to why I didn’t ‘just take painkillers.’ The amount of time, effort and money my mother and I have spent on attempts to cure my pain does not bear thinking about. I’ve tried yoga, meditation, Alexander Technique, cold baths, hot baths and circulation therapy. I’ve tried every kind of medication, pain management technique, diet plan and weird herbal concoction I have ever been recommended. I’ve tried steroid injections and surgery, healing crystals and prayer. Few were in any way helpful, and some made things significantly worse.

Sunshine and a strict physiotherapy regime make my pain marginally more manageable. Alcohol and/or drugs will sometimes ease the pain altogether, but the strength of painkiller needed for that is simply not compatible with leading a functioning, fulfilling life. Yes, I’m sure morphine was great fun that time you had your appendix out, but try writing an essay or going to work while you’re on it and you’ll see what I mean. In fact, I’m lucky that, when I’m desperate, morphine still does the job. There are many people whose chronic pain is so severe that no painkillers exist to help them. The speed with which medical science is advancing is incredible, but human understanding of pain is still lacking, and there is no such thing as the miracle cure of which my taxi driver was so convinced.

The third response is awkwardness, because chronic conditions make people uncomfortable. Tell a friend you’ve caught a cold, broken your arm or need your tonsils taken out, and they will (hopefully!) tell you to get well soon. It’s easy enough to say, and both parties will feel better for the sentiment. But what do you say when the prognosis is chronic and likely to get worse?

The truth is, a little understanding goes a long way. Chronic pain is usually invisible and always subjective, which makes it easy for others to forget about. A person in chronic pain might take longer than usual over certain tasks, or might need a bit more sleep than most, or might not always be able to go out when they want to. Knowing that your own body can’t keep up with its owner is immensely frustrating, but knowing that others understand why you are the way you are is a huge relief. My pain is constant, but with a little understanding and a helping hand when needed, it does not have to define me.

Please click here to read the Spoon Theory, a really great explanation of life with a chronic condition. I don’t have lupus, but I do have spoons.