“In each of us, two natures are at war – the good and the evil. All our lives the fight goes on between them, and one of them must conquer. But in our own hands lies the power to choose – what we want most to be we are.”
― Robert Louis Stevenson
Rare is the day when you have lupus that no part of your body is sore, aches, itches, gripes, falls out (don't worry just hair) or is exhausted simply from the walk to work.
Managing these symptoms and putting in coping mechanisms is key to maintain some semblance of normality in our chaotic world. I am yet to discover a way of describing the difference in fatigue to someone who claims 'well we all get exhausted sometimes'. In response all I can say is well, its almost paralysing. There have been moments where your legs don't feel remotely attached to your body, and someone is smothering you. It is this happy bundle of symptoms that we have you to juggle should we be deemed fit to work and hope our current or new employer can manage our welfare needs.
It's important for what I say from now on I try and remain dignified and diplomatic in retelling the events to come. But I feel it an important part of my story and yet again highlights the need for understanding and compassion in the workplace, so often hearing stories of how seriously ill or suffering people have been mistreated or mismanaged welfare.
After being critically ill I was back at work in 6 months, starting off a few mornings a week and building up to four days. I had held a role with as a store manager of a very well known luxury retailer for 5 years, from launching the store, building its business reputation, and becoming an established manager within the company. With an unblemished record and barely a day off sick the company backed me all the way when I became very ill and I left the store in the capable hands of my deputy.
Unfortunately when I came back everything wasn't so simple. Barred from managers meetings and discluded from line manager visits I was told it was because they didn't want me stressed... Gradually day by day I saw 5 years of my hard work unpicked at the seams by a ruthless 22 year old determined to make me feel like something she had scraped off her shoe, whilst using my ill health for her own personal and professional gain. Armed with her new sidekick that had the warmth and sincerity of Joseph Goebbels, she launched a campaign of discreet and at times barely noticeable acts of malice to discredit my name and alter peoples perception of me from a highly competent manager, to that of incompetent cripple. If I was in with Joseph without Hitler I'd know from snide remarks the next morning they'd had a PR conference call after work recounting my every move for the day.
Faced with an area manager whose infrequent visits made an absent father look like a role model and HR department who didn't know their arse from their elbow, I was again on the front line, still battle scarred and fragile from the war I had encountered previously. I was being punished for craving to return to my normality and what I thought was my life. A lot of what I encountered could, in hindsight, be condemnable for any employer. But at the time I was ill equipped to deal with the confrontation in front if me, massively disarmed by six months of absence, loss of self confidence and the insecurity that I was perhaps being over sensitive and imagining it all.
Despite raising my concerns with my line manager and a brief ceasefire, things soon continued as before. Decisions were made on my behalf as to what was best for me in the workplace without consultation with me or asking what I wanted or how I was feeling, Hitler continued to badmouth me and tell all sundry 'I wasn't well enough to work' and soon enough 'Claire will leave, I'll get manager and .... can be assistant manager.'
Sadly, none of this could be proved, a lot was hearsay and one persons word against another. I'd been so consumed with getting back on track and putting everything down to 'teething problems' that I didn't even think about making notes, logging emails, details and things said... That all seemed like I was to be prepared for battle beforehand, but I wasn't, I just wanted my reality back. By March 2012 I was defeated, I had to make a choice, a choice that felt cruel but necessary - having to surrender and relinquish your hard work to somebody so utterly undeserving. They say good always triumphs against evil in the end but good has a soul and a soul needs sanity to survive.
On 19th April 2012 I sat solemnly at the desk that had been mine for so many years, pen marked and chipped from hours of review and report writing, now ungraciously claimed by another, and with a broken heart wrote the email that I never thought I'd have to write. It took me over half an hour to type the eight lined paragraph that summed up with a vague dishonesty my reasons for leaving and hit send. It was heartwrenching, not because I was a shallow workaholic that loved my job, but because of the hard work and dedication that had so rapidly disintegrated to nothing. Days worked over my contract, staffing nightmares, sleepless nights, midnight finishes after events, the clichéd blood, sweat and tears. The role had defined a huge part of me for so long and was symbolic of some of my best achievements, but it was clearly the end of a chapter and a little voice in side said 'its time to go', and 4 weeks later I did such that. On reflection, I still wouldn't change a thing, don't place any blame or negligence or seek vengeance. Yes it was very cruel and unfair what they did but it had to happen to be where I am now.
After I finished in my management role I worked part time in what I hoped would be a less pressured, stop gap role but which it turned out to be just like jumping from the frying pan into the fire (that's right, the universe wanted its full quoter of hits with the shit stick - 2011 and half of 2012 weren't enough) I yet again found myself at the mercy of other peoples ignorance but this time it was with twice as many colleagues in a huge international corporate machine, my name another number on the payroll sheet (and they didn't even get that right). And so I graciously emptied my locker, walked out the door and for the first time in my life added to government unemployment statistics. Queuing up at the job centre is one of the most heartbreaking and soul destroying things I have ever had to do in my life, despite all that I had been through with my health and fighting for my life and my space on this planet, I now had to fight for a job and for respect.
When it came to interviewing for my current job, I battled with my conscience for several days in how much back story and information I should give them in the interview. Advice told me I should wait and explain the situation once offered a role, but after the hellishness of the previous working months I hadn't anything more to lose, I decided to be totally upfront and should I be asked to explain my drop in responsibility, if they didn't value my honesty or understand my illness then it wasn't a company I was prepared to work for.
As luck would have it this was a company like no other in regards to how they considered their employees. I was brutally honest, admired for being so and my illness - as it so rightly shouldn't be - wasn't even a factor. Two days later I got the call I was hoping for, I had the job and had beaten six other people to it. Six perfectly able, fit, healthy and just as experienced people. A year later i'm still there, I work with lovely people who seem to understand and an employer who often remind me that my welfare is 'very important to them.'
The world of work and employment is a minefield when you a have a chronic illness or disability that impacts on your working life, and finding the right company or employer is simply down to chance.
The whole experience of getting a new job is terrifying despite all the legislation in place to protect you, you have to hope that person considering you for a job will understand and see the talented, hardworking and committed person behind the illness. It's Russian roulette, and there's nothing worse than wholeheartedly explaining your illness to someone and you can see in their eyes they don't understand, or especially with lupus, don't believe you, as you look like everyone else.
