Diagnosing Dan

Before I get started however I should mention that I’m taking a slightly different approach to my blog this time round. I’m not going to be sharing this on social media. Instead it will be a space of solitude — if a public blog can ever be such a thing.

A warm welcome to those of you that have accidentally stumbled upon my blog. My name is Dan, I’m now 30 and for over 12 years I’ve lived with an undiagnosed health condition. 

The last time I wrote on here I wasn’t sure where my career was heading. I needed a job where I could work flexibly around my condition, but those kind of jobs aren’t easy to come by. That’s when, cutting a very long story short, Becks and I decided to create one!

Jot Paper Co. is a design and print studio specialising in hot-foil, letterpress & Risograph stationery. We knew whatever business we started had to be product-led. That way work wouldn’t come to grinding halt whenever I have a relapse. 

With a restored hot-foil machine we started designing and printing greetings cards and in a few short years Beck and I have moved Jot from our one-bed London flat, to my parent’s garden shed, to a humble studio space in Liverpool’s Baltic Triangle. We now supply our products to stores across the world and despite there being a long way to go until Jot is fulfilling its creative and financial potential, I’m incredibly proud to call myself co-founder and director of Jot.

There’s a lot more to this story, most of which focuses around the sacrifices Becks has made to allow Jot to exist. But for now I really should crack on with some work so I want to leave you with a couple reasons I couldn’t be happier with our decision to start a business: 

I no longer have to rely on disability benefits. 

I met Paul in high school. The three of us were put in the same class, 7B25 (year 7, blue tie, room 25). Paul could turn his hand to most things: he’s an exceptional musician, he was pretty handy with a brush and the school’s substandard poster paint and like Bunny he was academic. He was also, if it’s not too rude to say, pretty swift for a big guy!

Chatting with them both got ol’ soppy bollocks over here started feeling rather sentimental. It got me thinking about high school, which in my case wasn’t the horror story we’re so used to hearing. In fact I had a great time! I played Rugby inside and outside of school. I ran, a lot. I played golf. I swam. My drawing skills were probably better then than they are now and overall I was pretty popular — although I’m sure a few people would have a little something to say about that!

I got lucky, I wasn’t riddled with blemished skin — I had a few spots but nothing too drastic. I can’t even remember my voice breaking. And I had the pleasure of sharing my adolescence with some wonderful people, some of whom I keep in contact with, some I don’t (but wish I did) and of course there’s a handful that, frankly, are better left in the past.

After college Bunny moved to York and Paul to Leicester. We kept in contact, we still do, but we don’t speak or see one another half as much as we could/should. Now I’m in my mid twenties I’m determined to keep our friendships from petering out. That’s not just because Bunny and Paul are both wonderful people that I enjoy spending time with. It’s because we have history.

Here’s a little Diagnosing Dan fact: Bunny has witnessed more of my black-outs than anyone else. More than my closest friends at University, even more than my Mum, Dad, Brother and Sister. By now Becks and Bunny are probably level pegging but that’s quite an achievement when you consider that I’ve been in a relationship with Becks for nigh on eight years.

Throughout the first twelve to eighteen months of my illness, shortly before Becks and I became a couple, I was blacking out three to four times a week. And poor Bunny found himself in the wrong place at the wrong time, time and time again. Thankfully my blackouts have continued to reduce substantially since.

For the first year of my illness Bunny was my unofficial and slightly unconventional carer. I don’t recall Bunny making that decision consciously, I think it was just thrust upon him. That being so, I’m very grateful. He approached every situation with a level headedness well beyond our years, which is invaluable when you’re caught in a swarm of eighteen year olds. Over half a decade on and despite seeing Bunny no more than a handful of times each year, I will always appreciate everything he’s done for me.

Paul’s story takes us back to 2006-2007. I was in and out of hospital on a bi-weekly basis and like many of my friends Paul was off at University. He was living in Leicester, not too far from Luton and wasn’t back very often. We mainly interacted via text and MySpace (phones weren’t quite the walking, talking, internet surfing pocket computers that we have today). I was still on pay as you go, 10p a text, so communication with the outside world was limited.

It was a day much like any other in CCU. I was unceremoniously woken for breakfast by Cathy, one of the day nurses — and one of the most over-qualified, under-utilised nurses you’ll ever meet — who took great pleasure in tilting the top half of my electric hospital bed to its upright position (just short of a right angle) before moving the handset out of reach forcing me to get up. It became a battle of wills. I’d try powering through, ignoring my cricked neck and the pains shooting down my spine but she would invariably win in the end.

After breakfast and doctors rounds I’d spend hours getting ready. I quickly mastered the three hour, three S’s: shit, shower, shave. That’d leave me just enough time to get dressed and have a drink before lunch. Nap time was around two o’clock. I’d entertain myself by visiting the lovely, elderly female patients at the other end of the ward.  In my experience, there’s a lot of truth in the theory that women handle illness better than men. But that’s a topic for another day.

Between three and four o’clock my eyes would be glued to the clock hanging precariously over the toilet door. Four o’clock was the start of visiting hours. I was always excited even if I wasn’t expecting anyone, it was just nice to hear some different voices. However, this particular day played out slightly differently.

Around half past three my phone rang, it was Paul. “Are you in CCU?” he asked. Which of course I was. He continued, “Can you come and let me in?” Confused and excited in equal measure, I clambered out of my seat, stepped over a pyramid of cardboard urine bottles stacked next to my bed and walked out into the dimly lit corridor. Turning to face the entrance/exit (a pair of locked double doors) I instantly recognised that mass of dark, fluffy afro hair bobbing up and down through one of the door’s small, circular, reinforced windows.

The nurses were pretty strict on visiting hours so I began to panic. Would they let him in before four o’clock? I pushed the big green button against the wall and Paul slowly pushed his way through the door dragging an battered, black suitcase behind him. Before saying hello he announced, “Don’t worry I’ve spoken to one of the nurses, they said we can use the relatives room.” I turned round to see Mel, the sister on duty walking towards us with a smile from ear to ear. She guided us into the relatives room, flicked on the light, turned to Paul and said “You can stay as long as you like. Have fun!” And with that, she walked out and closed the door behind her.

Still confused I watched Paul unzip the suitcase, flick it open and pull out two foot long subways and a two litre bottle of coke. He gave one of the subways a sniff, “That’s yours.” he said. He continued to rummage through the suitcase and like a tech-savvy clown began pulling out a never-ending bundle of wires. Then the big guns started to appear: a TV, a remote, two controllers, a stack of games and a PS2.

Needless to say that was, without question, the best day I ever spent in hospital. Hell, it’s up there as one of my best days ever! Around nine/ten o'clock, long after visiting hours were over, Mel popped her head round the door and gave the knowing nod we’d both been expecting.

Paul stood up and before we had chance to say a thing Mel jumped in and announced that I was allowed to keep the PS2 in the ward on a few conditions:

I had to pack it up each evening.

I had to keep the room clean and tidy.

Visiting families had priority and I would have to leave the room as soon as I was asked.

I can’t remember exactly how long I kept the PS2 in CCU. I was waiting for a transfer so I can’t imagine much longer than a few days. But what a glorious few days they were!

A few (very long) minutes passed before the haze finally began to lift. The sea of grey came into focus one pebble at a time revealing frost-bitten pavement. My eyes tracked the concrete to the horizon where the brown sky emerged as an intimidatingly large block of flats towering over the scene. The crisp, autumnal air was engulfed by an overwhelming, yet strangely familiar odour of sewage, the likely result of ongoing road works.

A wave of clarity smacked me in the face (which I later realised was in fact the floor). I recognised those flats, that smell and those sounds. I was in South Bermondsey on my way to work and I had blacked out.

I tentatively ran my hand down the left side of my forehead, over my cheek, all the way to my jawline. My skin was firm and taut. It felt swollen but numb with cold it didn’t hurt. By a stroke of luck (if I dare call it that) the frozen pavement had served as a makeshift icepack that helped to subdue most of the bruising and had kept the initial discomfort at bay.

I spotted a brick wall a few metres away, the perfect place to perch as I regained my strength. I heaved my shoulders off the floor and bum shuffled to the wall like a dog with an irritable back end. As I sat there, patiently waiting for enough energy to move, I watched hundreds of vehicles zip past.

I questioned then, as I do now, how is it that during rush hour on a weekday morning, didn’t anyone think to stop? I’d like to give people the benefit of the doubt of I wasn’t exactly hidden from sight, take a look:

Where it all began

Freud’s defence

Freud’s critics

I’m lucky to live in country that takes equality seriously, but there’s still a long way to go until we have true equality. Here’s one such example I wish I hadn’t experienced: 

Applying for a new job is never easy. You spend days updating your CV and writing the perfect cover letter... only to discover it's an online application form. And if there’s one question I dread more than any it’s, “do you consider yourself disabled?” 

An employer is playing with fire if they choose to ask this question because unless it could be considered illegal. I have no experience in the field of law, but it seems fairly self-explanatory in The Equality Act 2010:

A person (A) to whom an application for work is made must not ask about the health of the applicant (B) -

before offering work to B, or

where A is not in a position to offer work to B, before including B in a pool of applicants from whom A intends (when in a position to do so) to select a person to whom to offer work.

That said, according to information from the NHS an employer can ask questions about health or disability when:

they are trying to find out if you need reasonable adjustments for the recruitment process, such as for an assessment or an interview

they are trying find out if you (whether you are a disabled person or not) can take part in an assessment as part of the recruitment process, including questions about reasonable adjustments for this purpose

they are asking the questions for monitoring purposes

they want to make sure that any applicant who is disabled can benefit from any measures aimed at improving disabled people’s employment rates, such as the guaranteed interview scheme

where the questions relate to a requirement to vet applicants for the purposes of national security

where the question relates to a person’s ability to carry out a function that is absolutely fundamental to that job

In May 2014 I contacted a world renowned department store regarding their Equal Opportunities page because their form was outdated and did not adhere to The Equality Act 2010.

I must admit, I got a little carried away and went on to suggest that in the absence of a resolve within five working days, I would contact the “Equality and Human Rights Commission to investigate [their] application process, which… I believe[d] to be unlawful.”

What’s that smokey aroma wafting around the room I hear you ask? That's the smell of bridges burning.

Not to trump my own horn but it only bloody went and worked! Within a few days I received an email explaining that the information disclosed by applicants on the Equal Opportunities section of their application form wasn't used by the Recruitment Team or anyone else involved in their selection processes. They explained that their system was out of date due to the enactment of the Equality Act in 2010 (four years earlier) and that as a result of my complaint, they had amended their application form. 

On Tuesday 7th April I tuned into The Hospital, which had all the makings for compelling insight into the NHS with a particularly emphasis on medical staff’s perception of the younger generations.

It was a regrettable watch. According to senior consultant Naomi Cuthbert “most people in their teens and twenties [visiting A&E] aren’t ill”. Cuthbert went on to imply that most young people are binge drinking, narcotic guzzling, hooded miscreants whose sole purpose is to destroy A&E departments countrywide. And her views on class? A&E, Cuthbert suggests, has become a “bucket and mop”, clearing up the mess left by a “sub-set of society that is completely dysfunctional.” It’s this kind of thinking that leads to negligence, the likes of which I’ve experienced many times. 

 I’m twenty-one years old and have lived with an undiagnosed heart condition for three years. Due to the nature of my condition/s I frequent hospital far more often than your average young person. Roughly two years ago, during a two week stint in CCU at the Luton & Dunstable Hospital, I was illegally drug tested without my permission with the doctor citing a bias against young people much like those shared by Cuthbert. 

This particular Cardiologist wasn’t satisfied in keeping his hoodwinking to himself. He first asked for my parent’s permission to test me. Being the law abiding citizens I know and love they declined and insisted he needed to ask me directly which of course he didn’t. Having pieced together his ‘quick word’ with my parents, the introduction of a twenty-four hour urine-bottle and the nurse’s seemingly scripted line not to worry what it’s for, “the Doctor knows what he’s doing”, I confronted him. 

His response wasn’t to apologise for illegally testing my urine for drugs. Instead he played his trump card — when in doubt blame a nurse. He insisted it's a nurse's responsibility to make sure no illicit lines are crossed on ward, not a doctor's. To be clear, this is a lie and frankly quite worrying! 

I was young, I’d grown fond of the nursing staff and had no intention of getting them in trouble so I decided not to pursue this issue, a decision I still regret. 

On a separate occasion a nurse refused to put me on a heart monitor in A&E because in her professional opinion my condition was “drink related”. I had in fact been out for a family meal and blacked out during the first course. Not really enough time to gulp down a whole bottle of red. 

Another incident saw a paramedic ignore my girlfriend’s plea for him to conduct an ECG, as advised by my Professor, for over ten minutes. He was however more than happy to oblige within seconds of my Mum’s arrival. The ECG showed signs of Myocardial Infarction (heart attack). Who knows what helpful information could’ve been captured if he had acted earlier. 

 More often than not I receive wonderful treatment from NHS staff but it goes to show that doctors, nurses and paramedics aren’t always impartial. Cuthbert’s bigoted views on issues of age and class and her willingness to perpetuate damaging and farcical stereotypes should not be tolerated by the NHS. “Reality is,” she said, “some patients are more deserving of compassion than others.”

Cuthbert is entitled to her opinion but these should not be allowed to influence her responsibilities to provide equal, unbiased care. It beggars belief that the NHS would risk a patient’s wellbeing because of a consultant’s personal views, which as The Hospital quite clearly showed, Cuthbert is incapable of setting aside. In my opinion she should be struck off. I wouldn’t want to be treated by her. 

My gripe doesn’t end with Cuthbert. I’m disgusted that Channel 4 allowed The Hospital to be aired. It glamourised a notion that will ultimately put the fair medical treatment of all young people at risk, including those with serious and/or potentially life threatening illnesses. I’m currently being investigated for conditions under the Sudden Death Syndrome branch. They're very rare, difficult to spot and the morbidity rate is damning. I don’t need a doctor or nurse with a good bed side manner. I don’t mind what their political persuasion is. Nor do care if they hate everyone under the age of twenty-five. But I do expect fair, unbiased treatment without medical staff making assumptions of my health based on my age. 

Dramatic, right? Don't worry I didn't go trolling Cuthbert. And my loathing subsided eventually. But I stand by the sentiment of my complaint. The Hospital was an ill conceived and damaging piece of documentary film making. And six years on nothing has changed. I'm still being accused of taking drugs and being treated like a drunk, when the only ‘evidence’ of this is my age. 

Thankfully recent research driven coverage has greatly reduced cultural condemnation of disability benefit recipients. In June, 2012 you couldn’t open a newspaper without seeing data from the British Social Attitudes Survey on public perceptions of abuse of the benefit system. The results were stark, suggesting that the average person believes that 30 in 100 disability claimants are falsely claiming. When in fact, for Disability Living Allowance, estimated fraud is just 0.4%.

I receive Disability Living Allowance. I have done for many years and I believe there’s a simple explanation for its shrouded success: a mind-bogglingly comprehensive application form, cunningly worded to catch even the most deserving applicant out. Please take my word for it when I say that it’s not easy securing any disability benefit.

In the past I’ve also applied for Employment and Support Allowance, today’s more PC version of incapacity benefit. I was declined. Twice. Even through appeal. Why? Because of a ridiculous medical examination conducted by a paper pusher with no medical or healthcare background. It turned out to be one of the most belittling experiences of my life.

Mr Jennings, can you stand up for me?

Mr Jennings, can you walk to that chair [about a metre away] and sit down for me? 

Mr Jennings, can you return to your original seat for me?

Thank you Mr Jennings, you have no mobility issues.

Mr Jennings, can you pick up that cup of tea?

Mr Jennings, can you take a sip of that tea without spilling or dropping it on yourself?

Thank you Mr Jennings, you have no problem caring for yourself.

Mr Jennings, can follow me to the toilet…

Ok I may have used a little artistic licence, he didn’t ask me to go to loo, but you get the gist. And that was just the start. He then opened my application form to the mental health section and began chastising me like he was the plaintiff in a Judge Judy case. “Mr Jennings, do you have a mental illness? So why have you filled in the mental health section?” He went on to read aloud each question within the mental health section and corresponding answer followed by an in-depth, and may I say ignorant and ill-informed explanation as why my interpretations of my own symptoms were wrong.

So why did I complete the mental health section? Firstly, I’m fully aware that I don’t have a mental illness. It’s a topic close to my heart and as such I recognise the distinct differences between mental and physical illness. However I also believe there is a substantial, often underestimated, crossover between the two. From my limited experience I've learnt that mental illness has extensive physical repercussions. Similarly, physical illness brings with it a huge mental strain. In fact earlier this week Mum revealed that many of the Kleine Levin Syndrome suffers she knows through KLS Facebook groups have been prescribed anti-depressants because of the mental impact of their physical disability.

The examiner took particular umbrage with my answer to a question regarding concentration levels. It read (something like): Does your illness affect your ability to concentrate? 

I read it: Does your illness [mental or otherwise] affect your ability to concentrate? 

But they meant: Does your [mental] illness affect your ability to concentrate?

Unfortunately semantics count for nothing at the Jobcentre. In a nutshell, I didn’t tick enough boxes. That was one benefit down, what next? Jobseeker’s Allowance: 

“Mr Jennings, you receive Disability Living Allowance, is that correct? I also see a note from your Professor signing you off work, is that correct? In which case Mr Jennings, you’ll have to apply for Employment and Support Allowance.” 

I was dumb struck. I'm a disabled adult by the welfare state's own volition (by allocating me DLA). But I wasn't entitled to the benefit introduced to help disabled adults into work. Nor was I entitled to the benefit designed to help the able-bodied unemployed, even though they'd declared me fit for work. I was in bureaucratic limbo.

The issue was never fully resolved because I got myself a job and we all know how that worked out. So let's return to the question at hand, am I entitled to any benefits now? Yes, non means-tested Disability Living Allowance (DLA). Since leaving University my DLA has come into its own. Without it, financially difficult months would be financially impossible months. I like to think that the welfare system was built to help people like myself. I want to work. In fact I’m desperate to work. But try as I might I’m yet to figure out how. So why do I feel ashamed to publicly admit that I receive financial help?  

Benefit stigma in Britain is primarily driven by the perception that claimants are undeserving. Because I don’t look ill people may, and have, assumed that I’m part of the undeserving concourse. You’d hope however that amidst a barrage of judgement two parties would come to your defence. The welfare system and family/friends. 

We’ve established that the welfare system has its flaws but I also continue to benefit from it. I believe it’s one of Britain’s greatest achievements. It saddens me to know however, that a handful of people I hold dear have openly condemned my receipt of DLA. Their opinions may or may not have changed, it was many moons ago and I wasn't even directly involved in the conversation—I doubt they even know that I know—but it still irks me. For a start they’ve never seen me blackout. And through eight years of poor health, we haven’t had one in-depth conversation about my illness. Why not? Well, I used to think it was because we had better things to talk about.

For me this highlights a bitter truth about disability, particularly hidden disability. People will judge what they don't understand. It's a sad state of affairs that's not likely to change any time soon. There seems to be be two options:

take it on the chin.

go out of your way to correct and/or 'educate' those people.

You might be thinking, Becks is at work, why aren’t you? Well, I’m embarrassed to admit that I only work two days a week. To clarify, that’s two days consistent work. I also freelance from time to time, assisting the likes of set designer Tom Bird and graphic designer Kieran O’Connor / Kingston University on a whole range of projects. However those opportunities are few and far between.

My career prospects didn’t always look so precarious. Straight out of University having completed my dissertation entitled, The ‘Art’ of Window Display: Art & Brand Identity in Selfridges & Co. “Wonder Windows”, I interned at Selfridges working within their window display team. I had a wonderful couple of weeks. I built props and produced artwork for their Not Your Usual Christmas windows and I helped to develop concepts for their No Noise scheme. It’s also where I met Tom Bird!

Shortly after my internship Selfridges invited me back to build props for their No Noise window scheme, only this time I was being paid. My short stint in and out of Selfridges ended in November, 2012. Christmas was fast approaching and I had no work secured before the new year. What’s a man to do for money? Isn’t it obvious… bake gingerbread!

With a little help from friends and family Bread & Ginger became my one man gingerbread empire. Mum and Dad excused a rather sharp increase on their electricity bill. Tracy (Becks’ lovely Mum) helped me purchase wholesale volumes of ground ginger, flour, sugar and all the other ingredients needed to create a biscuity masterpiece. While Becks helped me make, pack and sell my baked goods at Christmas Markets across Bedfordshire, which she also drove me to.

There isn’t much money in the gingerbread industry, certainly not in Luton, but it kept me busy. Christmas and New Year flew by and in January, 2013 I bagged myself a job as a project assistant at one of the UK’s best retail display companies. There were a few health and safety concerns re my blackouts but thanks to disability employment law they were ironed out within a few days.

You’d be right in thinking that my career was looking prosperous for a new graduate. I had a good job in an industry leading company, surrounded by the right people and I was earning a reasonable wage. Beck and I also upped sticks from Luton and move into our lovely flat in London, which we still call our home nearly two years on. My life, for the first time since eighteen years old, was going in the right direction. But as they say, what goes up…

Being agency work, my contracted hours were of little consequence. You work until the job is done. Skipping over the inevitable sick day here, sick day there, my five (long) days a week took their toll. Just six months in and I was missing one to two days a week. By the time each weekend came around I was too tired wake, let alone do anything worthwhile. It was a vicious cycle: Work, get ill, rest. Work, get ill, rest.

But rest wasn’t enough. I had no time to properly recuperate. What was the result? My cognitive functions fell by the wayside. My memory was shot, my ability to problem solve had completely disappeared and I could barely string a sentence together. I was losing weight by the bucket load and my muscle mass reduced to such a point that I’d chose a pen not for its writing ability but for its light weight and slim girth.  

I eventually plucked up the courage to ask if I could reduce my working days to four a week. Work were happy to oblige but HR needed a few weeks. By then the damage was done. In the space of two months I had gone from managing a national rollout window display scheme for a world renowned luxury fashion brand (with support from senior staff) to being stripped of all desirable responsibility because, through no fault of my own, I was unreliable. Prospects of furthering my career in that particular role were long gone and although I was entitled to them, I became very uncomfortable with the amount of sick days I was having to take. My health continued to deteriorate until after ten long months I decided to hand in my notice.

But you can’t get rid of me that easily. As my notice period came to an end I was approached to stay on as a freelancer. Since then I’ve done all sorts for the company: production, design, photography, videography, copy writing, digital marketing, I’ve even been back as an assistant. Working three days a week I brought home just enough money to pay my rent and bills. Then I hit a bad patch, a very bad patch and missed a months work. The first thing you learn about freelancing: you don’t work, you don’t get paid. How could I afford a whole month living in London with no money? None. Not a penny. That’s £500 rent, approximately £150 utility bills, £40 mobile phone bill, £50 for Adobe CC and then there’s food and travel on top of that.

I still can’t believe we managed to get through that month financially. I used the little money I had set aside but Becks was our true saviour. She may earn more than me but not enough to pay for two people living in London. And yet some how she managed. Thankfully we’ve always been open with our finances, what’s mine is hers and what’s hers is mine. Although I think it’s obvious who pulled the short straw!

I’m sorry to say that my downward spiral doesn’t end there. Returning to work following my bad patch, they’d made the decision to reduce my days to two a week, which simply isn’t enough to pay my rent and bills. To make matters worse I’m still trying to get over one of the most prolonged and acute patches of ill health I’ve had in years. However, I take pride in the fact that work haven’t sacked me off all together. As a freelancer they have no obligation to keep me so I must be doing something right!  

There aren’t many things that truly get me down but work and money issues certainly do. I appreciate there’s more to life than what’s in my bank, good health being one of them, but I have bills to pay. Without sounding melodramatic, I’ve tried my best but so far my condition/s are winning. To quote Miranda Tate from The Dark Knight Rises, “it’s the slow knife that cuts the deepest.”

Picture at the request of Abby Corfan & Michelle Rollings

 With the exception of Beck, my parents have supported me more than anyone — financially and emotionally. It’s impossible to sum everything up in one post so here’s a story for all the Mums out there.

Back in 2006-2007 I went through, what I like to call, a ‘transitional stage’ in my life. That’s code for, denial. I was eighteen years old and all I wanted to do was run, play rugby, golf, drink, dance and be merry. You know, the normal stuff. I had a surge of blackouts to contend with but the fatigue that’s now the bane of my life was yet to rear its ugly head. My thinking was simple, like hell were these blackouts going to stop me doing what I wanted to do!

Luton had a surprisingly good music and club scene. You’d find the obligatory Liquid, Wetherspoons and Yates but they weren’t my bag. I spent my Tuesday evenings in Edge and Thursdays in The Park (a bar on Park Street, not just an open green space). We’d usually start off in Las Tapas / Amigos but the big one was Saturday night in FUnCK. Before you ask, I’m not having issues with my CAPS lock, that’s how it was spelt it. Subtle right?

FUnCK has since closed down but remains a thing of legend. It’s where I had some of my best ever nights out. And some of my worst. It’s also the first and only club / bar / pub I’ve ever been barred from. What for? Not for fighting, although I did get thrown out for that once when a guy started on me and brother. Not for swearing or being abusive toward the bar staff. Not for antagonising the bouncers. And not for drinking so much I was sick into the DJ booth. Nothing that common place. I was barred for blacking out.

I blacked out a lot that first year. Sometimes three to four times a week. Sometimes more. At college, at home, in pubs, in bars, on the street, at parties, at friends houses and in FUnCK. Ok, I admit I should have been more responsible. Proportionally, I blacked out in clubs, bars and pubs far more often than anywhere else. But I was young and had many lessons to learn. It took a long time for me to realise how much stress a night out put on my body. It was a dangerous cocktail. Clubs were crowded, hot and humid. And without a smoking ban in place you’d spend the evening engulfed in a tar infused fog. There was obviously a fair bit of alcohol involved and I had a penchant for dancing (yes I used to dance). Blackouts were inevitable. My Mum and Dad knew that all too well and they didn’t keep it a secret. Or at least my Mum certainly didn’t. But for all the “remember what happened last time” comments, they didn’t try to stop me once. Although I’m under the impression they wished they could have!

I blacked out in FUnCK a handful of times. I can’t remember the exact circumstances surrounding each event but it was the same ol’ story. I’d fall unconscious without warning, limp like a rag doll and remain that way for anywhere between five to fifteen minutes. Still unconscious I’d be hauled into their box sized medical room until an ambulance arrived.  On one occasion a paramedic applied a sternal rub — a pain stimulus to check how responsive a patient is — with such force that it cracked a rib - N.B. I was not responsive.

There was a bouncer in town whose name eludes me. He was huge. Easily 6ft 3” and twice the width. He had short ginger hair and rumour has it that he was only young. Around twenty at the time. Although I don’t know how true that is, he certainly appeared older! In short, he was a prick. He was the type of bouncer that would revel in riling someone up so much he could use ‘reasonable physical force’.  He once made me stand outside a bar in the freezing cold for ten minutes while he decided if my socks were suitable. Yes, socks. These days I’d tell him fuck off and go spend my money elsewhere, but I was young, easily intimidated and all my friends were inside.

After blacking out in FUnCK for the third time this particular bouncer took it upon himself to diagnose me… with a drug problem. And that was me barred. Arriving on the scene and being the vocal lady we all know and love, my Mum made no secret of my undiagnosed heart condition. But the bouncer couldn’t have cared less. And if he wasn’t going to listen to my Mum, my friends stood no chance. Needless to say I was gutted. FUcNK was incredible. Ask any Lutonian from my generation. Don’t get me wrong, his false accusation got under my skin but what could I do? Complain to the club? That wouldn’t do me any favours with an unruly bouncer roaming Luton’s streets. Besides, I had bigger issues to deal with.

My Mum works in town, just down the road from FUnCK in fact. Of a lunch she likes to wonder through the Arndale, perusing the closing down sales of Luton’s latest casualty to its failing economy. One weekday, on her way to M&S, Mum spotted a very tall, very broad, very ginger man, dressed all in black. She knew who it was instantly and without a second thought marched over to the bouncer, who dwarfed her 5ft 5” slim frame, and pushed him against the wall and let rip with a verbal onslaught. 

“Would you bar someone for having an epileptic fit?“ Mum asked. "No of course you wouldn’t, that’s discrimination, that’s against the law.” She continued, “is a heart condition any less debilitating than epilepsy? No of course it’s not, so why have you banned my son from your club?” Then she stepped it up a notch, “You’re breaking the law. I’m going to contact Citizens Advice. I’m going to report you to the council. I’m going to contact every local and national newspaper until you’ve been struck off and that club is shut down… Unless…”

They made an agreement: I had to provide a passport photo and write a detailed list of procedures that their staff could follow incase I blacked out. I must confess I wasn’t there when Mum accosted the bouncer, but I’ve heard the story, I know my Mum and I received a humble apology from that colossus of a man who welcomed me back to FUnCK with open arms. That’s a Mother’s wrath for you!

Let’s not beat around the bush. I don’t look ill. Or at least I don’t think I do. Certainly not in the picture above. But I am. I have what I’d call a hidden disability. Same premise as invisible illness, different name. I’m sure there’s hundreds of variations but to summarise: they’re all self-explanatory blanket terms for an ailment / illness / affliction / condition, mental or physical, that is unapparent to the observer.

Had I written this three years ago you’d probably be reading a chronicle of events in which people have said and/or done something, re my condition/s, that got on my wick. That wouldn’t have been fair. I’ve come to realise that it’s no ones duty to learn about every illness under the sun so they can react appropriately on the off chance it comes up in conversation. Nor is it my job to ‘educate’ every person that makes, what I deem to be, a senseless comment. Let’s not forget that the very nature of my condition/s, particularly fatigue, can make me rather grumpy. It stands to reason that I could be the belligerent one from time to time. That’s not to say I turn a blind eye to genuine rudeness. You don’t need to know the intricacies of every illness to be respectful. Simple common sense will suffice.

Health, illness and disability are sensitive topics, you can’t please everyone. Just look at the response I got to my Sleeping Beauty Syndrome post. I don’t like the term. Some people don’t mind it. Who am I to preach? With that in mind I’ll spare you the “Thirty things not to say to someone with a hidden disability” because what I’d actually be saying is, “Thirty things not to say to me about hidden disability”.  Instead I’d like to share a personal complex that’s a direct result of my condition/s.

I learnt the importance of chivalry — politeness or decency by any other name — from two of the most quintessential gentlemen I’ve ever known: my Dad, Mr Roy Jennings and my Grandpa, Mr Michael Pakes. My upbringing wasn’t the real life Tool Academy, they didn’t sit me down and explain why it’s polite to hold a door open or offer a seat to an elderly person. I learnt by association. Here we are, the Jennings, Pakes and Edwards family many years ago. My lovely Dad at the front right and my Grandpa in pride of place in the middle, who was sadly living with Parkinson’s Disease at the time.

I’m not perfect by any stretch of the imagination but all things being equal, if I see someone struggling with suitcase or pushchair I’ll offer to help. Unfortunately things, as I put it, aren’t always equal. I’m lucky enough to have such variation in the severity of my symptoms that even when I’m not feeling 100% I can still pursue something of a career. However, pushing myself to leave the flat has its drawbacks. For example, having to be the person on a train that takes the last seat.

Let me set scene: It’s been a rough start to the morning. I struggled to wake, my medication is having little effect and I’m running twenty minutes late. It’s rush hour at London Bridge and the north bound Northern Line platform is so full it resembles a crowd waiting for the headline act to arrive on Glastonbury’s main stage. Two trains have passed and I’m finally at the front. Human decency seems a thing of the past as the hordes adopt cattle-like behaviour ignoring the yellow line and pushing me so far forward my tiptoes are dangling over the platform edge.

I feel a wisp of air on my nose as the train pulls in just inches away. To the rabbles surprise (and I include myself in that) there’s a spare seat and I’m in prime position. I picture myself back at Stockwood Park Athletics Track preparing for the 4x400m final at Luton Town’s annual school sports competition. The circular lights begin to blink on the train’s double doors and leaping out of the blocks I nab myself a seat. Incase you’re wondering, for the purposes of this analogy there weren’t any passengers trying to get off the train.

It’s hot, it’s humid and I’m tired. A few stops down and the previously packed train has reduced to a humane level busy. We reach Moorgate and a lady, difficult to age, heaves herself onto the train. Is she in her fifties? Perhaps sixties? It’s not always easy to tell. Amid a sea of iPhones, books, Kindles and newspapers I clock two elderly ladies sitting opposite given me what I can best describe as the stink eye. I knew exactly what they were thinking. Here’s the dilemma: do I stay sitting because I feel unwell OR do I offer my seat?

Of course this is a rhetorical question. Only I know if I’m well enough to stand but it may surprise you to know how much it plays on my mind. And it’s not train specific, I could reel off hundreds of similar scenarios. Guilt plays a huge role but most the time I’m able to rationalise the situation and move on. Unfortunately it’s not so easy to forget those judgemental looks that bore into the side of your skull. I detest them.

In memory of MSN messenger which shut down a few days ago, here’s my A / S / L (or Age / Sex / Location). Twenty six years old. Male. Living in London. Six foot tall. Slim build. You could even say athletic build, which is more luck than judgement I assure you. I look fairly healthy. True I’m paler than most, just take a look at this picture from my cousins stag do last week. Pretty pale right? But that’s not necessarily down to illness.

I can’t hold those elderly women to account. They don’t know I’m ill. I look well enough. In fact their judgment comes from a logic. It’s perfectly reasonable to suggest that a fit and healthy young man or woman should offer their seat to a passenger that may need it. Had I felt well enough I would have done exactly that.

After completing a Foundation Diploma in Art & Design at Luton Sixth Form College in 2008 I set my sights on Art School in the big city. If you can consider rural Kingston Upon Thames the city… or big.

Kingston University’s already rigorous application process was made all the more difficult by interdepartmental bureaucracy: setting health and safety legislation against stringent disability and equality law. The process left me jumping through so many hoops I felt more like Pudsey at Crufts than a disabled student trying to further his education.

To become a fully-fledged undergraduate and to live in halls of residence I had to comply with Kingston’s extensive list of provisos. The most ludicrous stipulation lead to a carer visiting me each morning. Needless to say I was indignant but there was a logic to their madness. I was suffering frequent bouts of prolonged sleep — symptoms akin to Kleine Levin Syndrome — as well as my blackouts. And University students are hardly renowned for looking after themselves. It ensured that they weren’t accountable. That all sounds rather ungrateful written down, but it’s true.

September 2008, all bright eyed and bushy tailed, I set off with my Mum and Dad in their Ford C-Max stuffed so full it would rival even the best ‘how many clowns’ joke.  We pulled into Middle Mill halls of residence town-square style car park, weaving our way between the families darting back and forth. Once parked we followed a crowd of budding students to the welcome office where I had a contract to sign and endured an awkward introduction with the site manager who shot me a look that said, “so you’re the numpty causing all this extra paperwork.”

With a set of rusty keys now in my possession I walked back into the car park, which was overlooked by a horseshoe of flats around the perimeter. I located block B and just like the man from the Yorkie advert I armed myself with as many bags as I could physically carry, stuck out my chest and away I went.

As soon as Mum and Dad left I implemented rule #1 in the newbie student handbook for dummies. Use a door stop. Within minutes I met Arun, my next door neighbour and all round nice guy. Seeing as it was a special occasion we enjoyed a rare treat. A can of aptly coined Danish ‘Red Beer’. A gift from my mate Bunny back in Luton. A few hours later we made the short walk to Knights Park (Kingston University’s Art, Design & Architecture campus) SU bar. The introductions were flowing. First Arun, Emma, Dave and Laurie. Then Mayur, Alex and Aundre. Then Alice, Emily, Robyn and Giles.

Not yet privy to anyone’s annoying habits, the first night is a particularly care free evening. You haven’t encountered the habitual mayo thief in room E who will soon leave you stomaching a disappointingly dry egg(mayo) sandwich. Or endured the obligatory flat meeting about the saucepan in the corner growing its own ecosystem.

Back at bar, I’d been queuing for nearly half an hour. Just seconds away from being served I found myself at a crossroads. Do I follow the lead of my fellow students and buy another pint OR do I listen to the insipid voice of common-sense in my head telling me to buy a coke. That’s when I realised, surrounded by hundreds of people, that I was on my own. For the first time I was solely responsible for my own wellbeing. I didn’t have family or friends in Kingston, no one who could hop in car and meet me in hospital in ten minutes. No one who knew what to do if I blacked out.

After reluctantly ordering a soft drink I barged my way through the crowd to find that Emma (one of my new flatmates) and co. had formed a plan. Apparently there was a house party Surbiton and everyone was invited. My mind went into overdrive. How far is this place? How do we get there? How do I get home? What if I feel unwell? Would anyone know what to do if I blacked out? What if everyone assumes that I’m drunk and leaves me? Keeping in mind I had only known these people for a few hours there was no question about it, I couldn’t go. It wouldn’t have been fair on them. So how was I going to get out of it?  Well… a little white lie doesn’t hurt anyone right?  

There I stood waiting for a taxi formulating what I thought was a fictional masterpiece, but in reality was a preposterous and unconvincing story. I can’t remember every detail and even if I did I’m not sure I could bring myself to share it with you! But I will say that it involved a hooded gang, broken glass bottles, dogs and a fictional friend who in hindsight sounded rather like Bruce Lee.

Thankfully everyone was so eager to leave I escaped a much deserved Q&A about my story. I sauntered back to room B1B and sat hunched on the side of my new bed. As I soaked up an eerie silence the penny dropped; my life had changed. My outlook, my physical ability and my lifestyle. Where was the sense freedom synonymous with University? Where was my independence?

Feeling forlorn, I rang Beck. I explained what happened (minus the farcical story) all the while struggling to maintain my composure. We said our goodbyes and I climbed into bed knowing that a stranger/carer would be knocking on my door early the next morning.

So why was I upset? I intended to be there for three years, what’s one night? More to the point, why have I bored you with a story that ends with me going to sleep? Hardly a literary triumph.

Six years on and that evening remains one of the most poignant moments in my life. I could emphasise how upset I was or explain how lonely, angry and helpless I felt but it’d still sound small fry. To help explain I’m going to call on ol’ faithful, the charismatic Mr Bruce Willis. Remember the twist in Sixth Sense — POSSIBLE SPOILER — and how Bruce reacted? I had a moment just like that. Everything I thought I could do, I couldn’t, and hadn’t been able to for a long time. Although just like Bruce that hadn’t stopped me trying. Going to University, going to work, going out, going to parties, everything that was going on around me was out of reach. Or at the very least pushed slightly further away.

For starters back in 2008-9, having deferred from a degree in Graphic Design at Kingston University, I had the opportunity to volunteer at Keech Cottage Hospice in Luton as a Sibling Support Volunteer.  It was a fulfilling, often sobering role working with children whose lives have been affected by terminal illness of a sibling.

I’ve also had the opportunity to take in an abundance of fascinating information from some of the world’s most distinguished Cardiologists, Neurologists and Autonomic specialists. A privilege I wouldn’t have wished for, but has been surprisingly enlightening.

…ok perhaps ‘wonderful experiences’ isn’t the best turn of phrase, but you get the point.

And how could I possibly forget to mention my wonderful girlfriend Becks, who I met for the first time in 2004 through a mutual friend, the multitalented Paul Phengsiri. But it wasn’t until 2007, having deferred a place on a Foundation Diploma in Art & Design because of ill health, that we became a couple. If only she had known what she was getting herself into!

Just a few days ago a new door opened. It all started on Friday 13th June (unlucky for some), when I received an unexpected message from Kieran, one of my University tutors and all round design virtuoso. He asked if I’d like to take part in a workshop with Kingston University’s new Supergroup initiative along with representatives from the NHS. Of course I said yes. I was delighted to find out that Kieran contacted me as a direct result of my blog. He hoped that as designer (of sorts) and with ample experience in and out of the NHS I’d have an insight worth sharing. Whether he was right or not remains to be seen!

“‘Supergroup’ is a Kingston University initiative to overlap its designers with design clients and design end-users — to design together.”

On Monday 23rd June I joined Kieran, Simon Maidment (KU School Head), Mike Part (from NHS England), Yoon Bahk (a graphic facilitator), NHS representatives and five Kingston students from this years graduate cohort at the Royal Marsden Hospital, London.

What is the project?

The project looks to reshape the procedures involved in making, altering, keeping and accessing patient information and records within the NHS.

What was the aim of the day?

To pull together a brief.

What did we discuss?

We spent much the day examining the current patient record system. Its faults. Why they exist. And the positive and negative impact of a nationwide overhaul.

While most of the discussion revolved around the end-users, patient and clinician, we didn’t stray too far from the elephant in the room — a thirty billion pound a year “black hole” in NHS funding, as claimed by NHS England.  It’s hoped this proposed change could provide the NHS some much needed dosh, or more aptly, reduce its outgoings.

Why do we need change (in my opinion)?

You might remember this extract from my post, Not So Lucky Voice:

“The A&E staff greeted us with similar scepticism, but in a turn of good fortune we had wound up in UCLH where I see Professor Walker.  It took a couple of hours, one very rude Doctor’s shift to end and my notes to arrive from the neurology department before the message started to sink in — I was not drunk.”

It was a rare luxury having my notes to hand and everyone benefitted, myself, Becks, Laura, Martin, the nurses and the doctors. Unfortunately this occurs so rarely that it was in fact the first time since leaving the care of the Luton & Dunstable Hospital in 2006 that I’d been taken to same A&E as my resident Professor.

So how do I usually receive the appropriate treatment without my medical notes? Well more often than not, I don’t. How could I if I’m unconscious and have no one with me? Assuming I’m drunk is a failsafe for medical staff, even if Becks is there to tell them otherwise, and it often results in a serious lack of treatment.

It’s decades into the so called digital-age and the NHS are still persevering with a system that’s incapable of sharing vital medical information hospital-to-hospital, even in an emergency. It’s archaic.

That said, I appreciate it’s a complex issue. It’s the NHS, it couldn’t possibly be simple!

What’s the counter argument?

I couldn’t really tell you. I’m quite biased. I’m all for it!

There’ll always be privacy and consent issues. But when I’m in an ambulance or laying in a hospital bed I wouldn’t care that some bloke in Dorset found out that I had piles a few years ago.*

What’s next?

Britain’s NHS was voted the World’s best healthcare system that same week. However having spent the day listening to over a dozen acutely intelligent NHS representatives, radical change is necessary if we’re to maintain that accolade.  

Seeing as Supergroup is in its infancy I won’t share too much too early. All things being equal I’m hoping to see the project through, so watch this space for updates!

I should stress once again that all views are my own.

An old friend once said to me, with a genuine look of fright on his face, that he thought I had dropped dead after witnessing one of my black-outs inside Kingston’s Oceana. It was as typical a black-out as I could have had — if there is such a thing. But despite most people having witnessed some form of collapse — a faint, an epileptic fit, even a paralytic drunkard falling face-first onto the pavement — nothing can fully prepare you for seeing a grown man hit the floor as a dead weight.

I do everything in my power, without becoming a housebound recluse, to avoid potentially dangerous situations. For example, by law I’m not allowed to drive, I don’t cycle, I don’t bath (fret not, I do shower), I don’t swim, I don’t cross the yellow line at train stations and we even live in a ground floor flat to avoid this from happening:

I’m lucky, my wounds have always been repairable, but you can’t heal fatigue with some frozen peas, antiseptic cream and a Sponge Bob Square Pants plaster. That’s why the adverse, day-to-day affects of my sleep disorder far outweigh those of a black-out. The past fortnight has been fitting example of this. I slept every day for over a week, waking for a few short hours each evening to eat and receive daily news updates from Becks. Then on Wednesday (July, 23rd) I blacked-out. But it was of little consequence. I was too busy sleeping to concern myself with a few scrapes and burst capillaries.

Here’s a fun fact, my chronic tiredness (or hypersomnia) didn’t reveal itself on that fateful day in Turkey. In fact my symptoms have evolved year on year, with hypersomnia coming to the fore in November 2006. The catalyst was a bout of glandular fever, leading to six years spent in a state of perpetual tiredness. I call them my bitter years.

Looking back, it’s no wonder that I was described as heartless and void of emotion (and that’s the censored version). Everyone’s grumpy when they’re tired. And how could I expect anyone to give me the benefit of the doubt for six years? I was short tempered and rude. But I was exhausted. And from time to time I still am. But everyone gets tired, so what makes this different?

Before I was ill, when tired I could eat a healthy meal, get a good night sleep and I’d wake up feeling refreshed. Now, I wake up exhausted, I spend all day exhausted and I go sleep feeling just as (if not slightly more) exhausted.

Unfortunately my bad patch is refusing to cease. As a matter of fact, it seems to be picking up momentum. I spent the latter half of last week and most of the weekend either asleep, or in a state of perpetual drowsiness. Worryingly, I lost out on two of my three regular working days. And to make matters worse, I was too unwell to keep work properly informed, which doesn’t do much for my reputation or future prospects.

But I think work is a can of worms best left closed for now. So where was I… Saturday afternoon I set about writing an all too familiar text.  It tends to go a little something like this:

“Hey [name], HAPPY BIRTHDAY! I’m really sorry, I won’t be able to make it tonight. I haven’t been very well this week. Please can I take you out for a belated birthday drink/bite to eat when I’m a little better? Sorry again, have a lovely evening! Dan x”

It’s a fairly adaptable template. I’m sure most of my friends have received something similar in the past. But it’s not easy turning down invites over and over again. I’m lucky, my small group of friends seem to understand. They still make the effort to visit my flat, to see how I am and to come to my birthday. In fact, above is my birthday BBQ documented by close friend and reportage illustrator extraordinaire Tim King — from A Drawing A Day, Day 124.

I try to keep my decision making rational.  For example, if I had gone to Tim’s party on Saturday having been so ill in week, and subsequently blacked-out or suffered a repeat of June 1st, Beck and I would have sat in A&E, shrugging our shoulders, asking, “why the hell did we do that?”

It’s been so long I don’t miss clubs and bars and parties and festivals and all nighters and seeing my friends vomit on themselves as they roll down George Street in a Tesco trolly. But it’s important to remember that I’m not alone in this. Becks isn’t ill. Yet she faces the same Saturday night fate as me.

The biggest difference, she’s awake — having to watch tosh like Ant & Dec’s Saturday Night Takeaway (although they are charismatic) instead of being out with her friends like many 25 year olds.  As I’ve said before, it’s her decision to be with me but that doesn’t make the reality of a weekend spent with an unconscious boyfriend any less lonely.

Having said that, we’ve shared many evenings being driven away from pubs and restaurants in an ambulance. And I speak for us both when I say a night in our flat is far more appealing.

One day I’ll dedicate a post to some of those events, but for now I want to share a story from September 30th, 2006.  It was my brother’s 20th birthday and I was in CCU (Coronary Care Unit), which was my first stay in a dedicated unit. I had never seen so many desperately ill patients lined up in one place. Most had suffered heart attacks or were awaiting heart surgery. But the majority welcomed the chit-chat from an 18 year old boy who didn’t quite grasp the gravity of his or their situation.

I thought my brother’s birthday would pass by with nothing more than a phone call and a couple of texts. But I was wrong. And around mid-morning my Mum, Dad, Tom, Jo (my brother’s girlfriend at the time) and Laura turned up with party food, paper plates and party hats aplenty.  

It transpired that Mum, desperate to spend Tom’s birthday as a family, spoke to the Mel, the Sister on duty, who gave permission for a low-key celebration in the relatives room before official visiting hours — on the condition that we disposed of our own rubbish.

My bed was a far from glamorous double-futon, which in my defence was the only double I could find to fit that matchbox of a room. Unaware that I was already unconscious Emma turned to me, and with a sharp nudge realised that not only was I non-responsive but my lips had started to turn blue. It’s difficult to know exactly how long I had been unconscious, being supine there were no tell tale signs like the thud of 12 stone man hitting the ground, but I can’t imagine it was any longer than a minute.

Emma jumped up, ran down stairs, through the hallway and galley kitchen, and into the garden where my parents were enjoying a few early morning rays of sunshine. Joining the quite panic, they called an ambulance and were directed to place my still unconscious body into the recovery position and to hold bags of frozen peas on my cooling-spots: wrists, ankles, neck and head.

We were later advised that alternative spots include the back of the knee, inside of the elbow and of course, the groin. The latter of which I asked friends and family to reserve for special occasions.

By the time the ambulance arrived I had regained consciousness, albeit in a slightly confused, non-lucid state. The paramedics found me with my head between my knees, slumped at the end of the bed — which is the only way you can sit on futon. They positioned an oxygen mask over my face and placed ECG stickers across my torso. I looked up at the worry stricken group of three stood on the landing and gave a reassuring, undoubtedly feeble nod.

I can’t recall the journey to, nor the first few hours in the L&D hospital. I assume they were spent waiting for a bed. But I remember being wheeled into Ward 14, the department of medicine for the elderly. Proof that hospital beds really are in short supply.

Except I wasn’t in the usual curtain walled cubicle, where just a sliver of fabric separates you from the man next door making good use of his commode. I had a private room.  Complete with wall mounted TV, a small chest of drawers and most poignantly, a door.

… for all of ten minutes. When I was well and truly trumped by an elderly patient with potentially contagious and life threatening symptoms.

I was kept in hospital for two nights.  The first in Ward 14, not in a swish private room. The second in AAU (Acute Assessment Unit), all in aid of seeing a Doctor for a matter of minutes before being discharged.

So, what did I learn?

Not that you get much choice, but if you’re going to be taken ill, try to make it a week day. Doctors like their weekends too!

BRING BACK T4!

Much to my dismay, I could no longer blame this guy for my ailments.