Perhaps the biggest battle – other than dealing with the illness itself – was to remain in work. Although I put in extra hours when I felt reasonably well and never missed a deadline, my employers were understandably concerned about my regular absences. This created the kind of stress upon which Meniere’s feeds, triggering all manner of spins.
Initially my bosses were understanding and thoughtful, but when you work in a school your immediate employers are not the ones who cough up your salary every month, and before long we were into a round of disciplinary-style meetings. Being the kind and considerate county council that they were, they initially attempted to bribe me – ‘go now and we’ll provide a good reference, hang on and that becomes more difficult to do’. What they hadn’t figured was that whilst I’m perhaps not the sharpest tool in the shed, I’m no dummy, either. I put together a written acknowledgement of my disability and proposed a reasonable adjustment: working from home up to 2 days a week, those days based on time I either needed to manage my illness, or when it was debilitating but not disabling.
They fought me, as I knew they would. They did not want to set a precedent, and they made it clear to me that my decision to work against them would not be treated favourably. When the situation did not magically improve, they asked me to make a second, different proposal. I submitted exactly the same one, together with a list of all of my accomplishments since being diagnosed. I insisted that, in being the network manager I had access to everything I needed from home, and that 3 days on site a week as a minimum was more than enough to manage the technical staff. When this was disputed, I turned to my two line managers and asked them to reveal how often we met in order for them to manage me. They got my point, but still refused.
Eventually, I assume after they consulted with their own advisors, they set forward a plan that partially met the conditions I had proposed. On a trial basis I was to work from home 2 days a week, but on Tuesdays and Thursdays only. I reasoned with them, suggesting that the lack of flexibility would actually make the situation worse, that I might be well enough to attend the site on those days, yet according to their terms not be able to, but actually ill on 2 other days, meaning I could be off site for 4 days in any week. When they insisted on going ahead, I handed over a document. What they did not know was that I had visited an employment solicitor, who had guided me through their likely responses. The first item on the document was a note telling me that my employers would probably insist on 2 set days, Tuesday and Thursday being the standard offer. It was a ploy on their part, and not a particularly slippery one, either. Nevertheless, the trial went ahead and, unsurprisingly, it failed.
Finally, after a year-long battle, I won the war – with them, if not my illness. They agreed to my proposal, and it worked perfectly for all concerned for 10 years. In that time I never missed a deadline and I achieved all of my stated and required targets. To do so meant having to give up evenings, nights, holidays, and weekends on numerous occasions, but it meant that I remained employed and could continue to find my way through the fog without that particular monkey on my back.
At all times during these fraught meetings I behaved professionally, used moderate language, and if I felt unable to provide an immediate response to a question, I declined to answer until I’d been given suficient time to consider it. The one thing I did not do – which I regret and now always suggest when offering advice to others – was to have someone in the room acting on my behalf, or at least to record the meetings. On a couple of occasions the minute taker fudged the language, and in correcting her it created a bit of animosity. That would not have happened if I’d been represented, and I would urge anybody in the same situation to learn from that mistake.
I was eventually made redundant from that post after 17 years of service, 14 of them as a Meniere’s sufferer. I won’t pretend that it was easy, but neither am I going to suggest it was the hardest challenge anyone ever had to face. Perhaps the reason it was successful was that my condition stabilised for a long period, allowing me to better manage its impact. There is no doubt in my mind that had it continued on its original downward spiral, I’m pretty sure that I physically could not have worked for that length of time, even with the adjustments. During that entire period I was mentally and physically fatigued to the point of exhaustion, and when not working I mostly rested in order to recuperate. But I got through it, enough to carry on working for more than a decade longer. As for what it all did to my home life, that’s for the final part of this series of blogs.
The Meniere's Society