Sunday, October 10, 2010

Work - Part 1 - Employment History

I've applied for a job. Gulp. It's been a long time since I've worked, so long it all feels like a lifetime ago. I was 13 when I got my first job, a sunday morning paper round with a bag of papers so heavy I gave up on the idea of a bike after being picked off the floor by several kind strangers, something I did not then forsee becoming a theme in my life. As soon as I turned 14 I graduated to after school shop work, waitressing, babysitting and later the glamour of washing dishes in a restaurant at the weekends. I worked all the way through school and university - like most students of my age group I had more than one job alongside studying nannying, bar work, shop work, whatever I could get.

My first recognised dislocation happened when I was working as a camp counselor in the USA, a couple of weeks after I finished my finals. It was a serious one, in retrospect it was far more than just the shoulder dislocation I was treated for as it also affected my spine and ribs. Surgery to repair my shoulder came at the end of the summer and I returned to the UK to recover a few days later.

I claimed benefits then, reluctantly so, but knowing that I would be without income for at least a few months it was the only option. It was 1998 so a nice lady from the DSS came out to the house, filled the form in whilst I was there and was able to ascertain that the injuries I had were genuine. Those benefits ran out 3 months later, by which time I'd been told I probably needed further surgery to my shoulder, but not to worry, I was young and so could just treat it as a year out then get on with my career.

I got a job waitressing in a busy restaurant but within the first few weeks it became very obvious that I couldn't even carry a single plate without causing my shoulder to dislocate. I stuck at it, thinking my strength would improve but before long my shoulder was getting worse and I reluctantly gave up the job. Giving up that work meant returning to the jobs I'd had whilst at university. I'd worked as a hostess/cashier in a local restaurant and hadn't wanted to return there as the owner really enjoyed sexually harrassing me, but it was work, it paid relatively well and the chefs would intervene, hide me in the kitchen and make me food until I'd finished crying on the occasions the owner went too far. One of the regular customers managed a local veterinary practice and after witnessing many incidences of the boss's idea of humour told me that I absolutely did not have to put up with such abuse and arranged an interview at the veterinary practice he managed. I got the job as a receptionist and was able to leave the restaurant. I also worked 16 hours a week in a video shop earning just under the limit to pay national insurance, although I did for the first time earn enough to pay national insurance when I was working at the vets. They were jobs I could fit in around physiotherapy and hospital appointments and were far easier on my joints than the physically demanding restaurant jobs had been.

The year out turned into another and I found I was still waiting for surgery.  By the time I reached the top of the waiting list there was far more damage to my shoulder than there had previously been, but for what at the time were inexplicable reasons the surgery didn't work as expected and I found myself able to do far less than I'd been able to do before. I just couldn't manage to keep up both jobs and physiotherapy so eventually, some months later I had to give up the job in the vets. By then it was more than two years since I'd finished university, once again I was on a waitinglist for surgery and really panicking about my future. It was impossible to find full time work that I was able to do physically and that would be possible to fit around the random nature of NHS appointments so I continued working 16 hours a week, not earning enough to pay National Insurance and waiting to 'get better'.

'Getting better' never happened, in fact things just got worse and in addition to the physical difficulties I was experiencing I was starting to have serious psychological issues as those around me went from sceptical glances to outright criticism, fuelled by the doctors treating me, some of whom had no qualms screaming at me in front of a ward full of other patients that I was wasting their time and had nothing wrong with me a psychologist couldn't fix. No-one ever did refer me to that mythical 'able to cure everything psychologist', but many, many insisted they would.

I applied for jobs, lots of jobs, anything and everything but I already had several years of health issues and part time work to explain away. Once employers heard that I was on a waiting list for further corrective surgery they were understandably uninterested. I gave up on any kind of graduate job after going through the interview process for the NHS graduate management scheme. I reached the final interview stages and was told by the Chief Executive who interviewed me that I'd given the most impressive interview she'd seen, after which I had been recommended for a place. However, they regretted to inform me I had not been successful and she could only urge me to reapply when 'my health was more settled' following the next surgery as she could not see any reason I would not be successful. I never did reapply, my confidence had been destroyed by then.

The next surgery eventually came, then the next, and a few more for good measure with a few experiemental procedures along the way and before I knew it I was over 25 with a patchy at best employment record, still living with my parents and too unwell to even manage 16 hours work a week. The benefits system had moved on, slightly stern but kindly ladies no longer came out to fill in the forms and check circumstances were as claimed, you just had to figure it out for yourself and wait months while the details on the form were checked. As I was over 25 I was no longer protected by the 'young person's rule' which exempts younger people who've been in full time education from the need for National Insurance contributions to claim Incapacity Benefit. I was 26 and had been working in part time roles that didn't earn enough to pay National Insurance so I fell through the gaps in the system onto Income Support, a distinction that would later prove vital.

I carried on applying for jobs, although my physical and mental health were very poor. After years of failed surgeries and outright disbelief I reached a point where I had no idea whether I was so mentally unwell that I was doing all this to myself and just didn't know. Diagnosis of Ehlers Danlos Syndrome was still several years in my future and I was desperate and depressed. I was fighting a GP who made his view that I was a lying attention seeker abundantly clear and blocked an initial application for Disability Living Allowance.

Finally after being sent to a psychiatrist and widely regarded as lazy and workshy my shoulder surgeon promised that was it as far as surgical treatment options were concerned and one of my job applications offered me an interview. It was a part time, low waged, administrative role in the NHS but I was overjoyed, seeing it as a stepping stone to a career. I was offered the job after interview and started in the February of 2003. Access to Work, the scheme which provides equipment and support to disabled people in the workplace had a duty to assess people within 6 weeks of their start date. My assessment was 5+ weeks after I started working, which doesn't sound much but by then the damage had been done. I was working in a very isolated part of the hospital, alone in an office which was in a locked corridor. I felt far more lonely than I had done when I was out of work with the added complications of an unsuitable chair and an old folding table doing the job of a desk. It had metal edges and cut into my arms as I tried to sit high enough to reach it.

When Access to Work eventually assessed me they came up with all manner of adjustments to make, but as is so often the case I was shoehorned into them rather than the adjustments being customised to my needs. A phenomenally expensive height adjustable desk and special supportive chair were ordered, but the chair was that bit too big and my feet never reached the floor. Despite the high price tag they didn't make chairs or desks that went small enough and I certainly wasn't confident enough to object. I loved being employed but was struggling physically and emotionally which was compounded after a serious dislocation in the office when I was alone meant I remained on the floor for an unknown length of time before being carried out of the hospital I worked in by paramedics taking me to another hospital. 

I was 'medically suspended' after that until the correct office furniture and equipment arrived which took some months. In fact it took so long for all the equipment recommended by Access to Work to arrive that some of it still had not turned up after I'd become too sick to work and had lost my job by September 2003.

Although I'd had more time off sick than I had worked my employers wanted to keep me as they had no concerns with my work or committment to the job. A 12 month unpaid career break was negotiated so that I could return to work at the same grade although probably not the same role once my health had stabilised.

I was diagnosed with Ehlers Danlos Syndrome in February of 2004 by which time I was desperately unwell, in debt, disabled and on the verge of mental breakdown after so many years of disbelief and accusations of malingering. My award letter informing me I'd been awarded Disability Living Allowance arrived the morning I was to travel to London and be diagnosed, the award dated from prior to the loan I'd taken out to survive whilst I had no wages or benefits and would have negated the need for the loan had I known.

The disbelief and disrespect I'd been shown by so many doctors continued to cause problems for me despite being diagnosed by an internationally recognised expert in Ehlers Danlos Syndrome. A rehabilitive programme was suggested but never materialised once I returned to my own area. My shoulder surgeon looked extremely uncomfortable but to his credit apologised to my face for having missed the underlying cause of my problems. Other doctors had left themselves no room for retreat from their accusations towards me and continued to disbelieve me, to the extent that I was accused of having falsified the letter sent to my GP by Professor Grahame after he diagnosed me. It was an impossible situation for all concerned. After I was able to change to a new GP practice this problem was gradually left behind but all the accusations of attention seeking still remain on my medical records.

When my twelve month career break was over I'd still not managed to find a way of accessing any of the rehabilitation methods recommended and had to regretfully inform my employers that not only was I not fit to return to work but that there was no expectation that would change in the immediate future as I was unlikely to be able to access any treatment or support.

That was the last time I worked.

5 comments:

OrganisedPauper said...

Sounds all too familiar. You'll also find that a very large number of people who eventually get diagnosed with autoimmune conditions, especially women it seems, have the tag 'attention seeking' somewhere in their medical notes.

When I eventually got properly diagnosed, after 5 years of struggle, it turned out I had more than one condition and even then it took a year or two to work it out and combined they are very difficult to manage.

Joanna Cake said...

I read this with a sense of open mouthed horror. It just beggars belief x

MeriLizzie said...

I have been through similar. I now have an office job handling inbound customer service calls for a wireless carrier. My employer has a difficult time understanding why I can't work full time. I had to purchase my own mouse pad, keyboard pad, larger pens so I am able to write, and brought in a footstool to raise my legs due to blood clots. I just can't sit for 8 hours. Currently I work 5.5 hours with one 15 minute break. Sitting causes pain in my hips/tailbone/pelvis. I also have SBO, Spina Bifida Occulta, located in the last vertebrae above my tailbone. I've been told I can't have SB cause I don't have a hole in my back! My legs go to sleep also if they can't touch the floor, or just from sitting that "normal" in a chair. I have a recliner at home that relieves the pressure on my hips and keeps my legs from going to sleep. To bad I can't have one for work! (p.s. I'm in the USA)

@MeriLizzie

Veronica said...

Wow.

Also, good luck with the application! I really hope you get it, knowing that you wouldn't have applied for anything silly (diving instructer? Marathon trainer? Maybe a weight lifter...)

steph said...

Ah, Bendy

Congrats on writing such a brave post. It can't have been easy going back to remember those days.

"Waiting to get better"

"failed surgeries"

These are such familiar phrases to me and I'm sure, to most EDS'ers.

Your work ethic is faultless and to be admired. You haven't let anyone down, it's your body that has let you down.

(((hugs)))