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First Person: Epilepsy, Depression and Me

I’ve battled depression on and off for over 20 years now, and have sunk to some real lows in the past. Ten months ago though, I imploded magnificently.

But more of that later. Let me give you some background first…

I turned 40 towards the end of 2011 and celebrated with a splendid party attended by close friends and family, including my wife and two young daughters.

A couple of weeks later, out of the blue, I had a massive epileptic seizure at my desk. Full thrashing about, eyes rolling, foaming at the mouth, the works. During the course of that evening I had two more seizures of similar size, which saw me hospitalised for a week, signed off work for a month and diagnosed with epilepsy.

Further episodes followed – one on Christmas Day after which I came round to find three paramedics in my bedroom, and one more – the last to date, touch wood – in January of last year.

In January, on a generous dosage of new anti-convulsant medication, I returned to my job as an Account Director at a high-profile PR agency, where I managed half a dozen accounts and ran a number of small teams.

And it wasn’t long before I noticed things going awry…

My memory, something I’d always been very proud of, was failing me – particularly short term. I found myself speaking to colleagues and wondering all the time what their name was. I could have a conversation with my director and, by the time I’d returned to my desk – a matter of seconds – forgotten everything that had been said.

And the tiredness… I was practically falling asleep at my desk by 4 o’clock every day and I was finding it hard to concentrate on anything for any length of time.

This was, of course, beginning to affect my work,and wasn’t going unnoticed. I was making mistakes, schoolboy errors that someone of my age and seniority really shouldn’t be making. And they weren’t one offs either; this was becoming a regular occurrence, requiring my director to point them out to me a number of times each day.

I was now beginning to beat myself up about the mistakes that I was making at work, and a gnawing sense of anxiety set in with every email I typed, every press release I wrote, and every conversation I had. I knew that it was highly likely that I was going to fuck it up, and no-one but me was responsible.

This was beginning to seriously worry me, and I sought comfort in epilepsy forums and notice boards, looking for reassurance that this wasn’t just me, and that it did happen to other people.

One poster, of similar age and circumstance as myself, described his experience as “being taken out of his body and replaced with a complete fuckwit”. While I fully identified, and somewhat reassured – I wasn’t alone after all –  this still proved to be cold comfort to me.

My wife had, of course, noticed that something was wrong and pressed me on it. At first I resisted and clammed up, I always do when I feel the signs of depression. Counter-intuitive I know, but I never want to be perceived as a burden. In the end I caved and told her everything and she sensibly suggested that the mistakes I was making and the subsequent stress I was feeling had only started since the epilepsy began. Her point? It wasn’t necessarily my fault.

Thinking on this further, I took a deep breath and – bravely for me – called a meeting with my director and HR manager and told them of my concerns. That the sudden onset of the epilepsy, combined with the side-effects of the medication, had left me currently unable to meet the demands required of my job. Following a series of meetings and consultations I admitted that, for now at least, I felt I could only manage a job where I was told what to do, rather than one where I was responsible for business decisions, for strategy, for people management. I wanted to be managed, not manage.

And I was fortunate enough for my employers to agree to this, and a new role was created where these expectations could be met.

However, this wasn’t due to start for another month and during that time the mistakes continued to build up, as did the stress that went with them. I had now lost my appetite, couldn’t sleep, and just wanted to curl up on the sofa and never leave home. I knew these feelings, I had experienced them before, and I did not welcome them.

The whole thing came to a head when I called another meeting with my director and told her that I could no longer cope. And then proceeded to start crying in her office.

Here was I, a 40 year-old father of two, sobbing in front of my boss in the office. Anyone could see that something had gone seriously wrong. I had reached my lowest ebb ever.

I was sent home for the rest of the day and made a point of calling my doctor and explaining what had just happened. He immediately signed me off work for the next fortnight.

I checked in with him before this time was up and admitted that there was still a crippling anxiety, a terrible knot in my stomach, at the thought of returning to work. He signed me off for another two weeks.

During this time I enjoyed my family, taking the kids to school, cooking their meals. I caught up with books, films and games that I’d neglected. I walked. I spent evenings with my wife.

I didn’t once check my work email.

Come the end of this second fortnight, I felt stronger, or strong enough, at least to return to work, to the new role that had been created for me.

Since then I have felt my confidence slowly return. I’m not going to lie, I still have down days, full of self-loathing and disappointment, days where I question what I’m doing, where I have to summon up the will to leave the house. The knot’s still there now and then, and I have the occasional sleepless night, but all of these are fewer and less frequent than before.

The drop in pay that came with the new role brings its own stresses, but on the whole my peace of mind is so much better than it was before I broke down in my boss’s office.

I know I’m extremely fortunate in having a wonderful family, a wife who understands and is used to my depression, and that I work for a company that really looks after its employees. I know that not everyone can be that fortunate.

What I would say though, is that sometimes, as much as you don’t want to, it can help to listen to those who genuinely have your best interests at heart.

And sometimes, although it’s hard, it can pay to admit that you’re out of your depth, that you can no longer cope, that you’ve reached the end of your endurance.

There really is no shame in this and sometimes, and again I know I’m fortunate, it can all work in your favour.

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6 Responses to this article

  1. I’m really moved by these words Ben – it’s a powerful story, and a tribute to you and your bravery, and also to your company for bucking so many of the stereotypes of harsh, unthinking employers and actually listening and working with you. I hope they feel able to tell their story too at some point (even if pseudonymous). It could also be really useful for other managers and business owners.

    Paul Clarke 22nd January 2013 at 11:48 am
  2. Thanks Ben for this moving piece. Although my epilepsy is mild, I can sympathise with the tiredness and general inability to retain information the way I once could. This leads to anxiety and lack of confidence. I too have reached the conclusion that although I will operate perfectly well in a work environment I need to be managed and no longer to manage. Not something I am finding it easy to explain to recruiters. The expectation is, of course, that we all want and need to climb the career ladder. As Paul says, your company could really help by sharing their incredibly good practice with other employers. And best of luck.

    Cathy 22nd January 2013 at 7:06 pm
  3. Thanks guys for your comments.
    Cathy, you’re right, it’s tough to admit that you can’t function professionally in the way that you once did. Having said that, given time and the right coping strategies, it’s not necessarily something you should rule out forever.
    Hopefully, by taking baby steps, and knowing where your comfort zone is, you may be able to get there eventually. That’s certainly the approach I’m taking, although I haven’t set myself any firm deadlines. All in its own time…
    With regard to my employers, you’re right, they handled the whole situation admirably. When you consider the potential damage that I could have done to their reputation with my constant cock-ups, it could have all turned out so differently. However, thanks to their consideration, it’s all worked out well for everyone. I’m now enjoying my new role, and am no longer a liability. Win win!
    I agree, it would be great for them to share their side of the story, but I’m a little cautious about asking. Maybe one day…
    Thanks again!

    Ben Adger 24th January 2013 at 12:34 pm
  4. This may be the first time I have heard of someone having the intelligence, perception, and resolve to approach managers and negotiate a change in job duties in response to problems like yours. Congratulations!
    One of the most devastating effects of “hidden” handicaps is guilt- the sense that if you would just pull up your socks, you could remember, organize, and carry out tasks. I had a brain injury decades ago and, despite a background in biology and in neurophysiology, it was difficult not to blame myself for everything from lack of initiative to fatigue. The more I learned about the neurological reason for my symptoms, the better I could accept them as physical, not psychological problems. For example, the brain rewires itself to do tasks, but in a jury-rigged, inefficient way. Seeing fMRIs of people as they recovered showed me why, though I CAN do the task, it exhausts me.
    I encourage you to talk to others who share your problem- you can learn from them to identify symptoms,

    Anonymous 28th January 2013 at 7:04 pm
  5. This is a continuation of the message above, which escaped prematurely! Language is designed to convey common experience. Someone who has had the problems you’ve had can recognize them from your attempt to describe them- others, even doctors, are just guessing. Your brain may improve- keep trying to do the things that are important to you. You will acquire new ways of accomplishing things. Learn about the parts of the brain that are affected in you and what those areas do. For many people, it is easy to understand “I can’t move my right arm because a certain part of my brain is damaged,” but they don’t understand that ability to organize, prioritize, decide, and find your way around town are also localized in the brain and subject to injury. It is OK to grieve for the loss of abilities that may have been the center of your identity, but remember that thngs may really improve and some of your problems may be related to (or improved by) specific drugs. There is no shame in what has happened to you, nor should there be guilt!
    I wish you the best of luck. Pat

    Pat 28th January 2013 at 7:22 pm
  6. This article has really struck a chord with me. I am an IT manager responsible for a number of sites. I got poorly with double pneumonia last year and since then I have struggled to cope with my work load and the pressures and challenges of my job. I feel like someone who needs to be managed, rather than a manager.

    I have spoken to my director and I have an appointment with a psychiatrist. So far my company have been very supportive. However I am scared to say “you need to recruit someone new to do this job”. It feels like I would be handing my notice in.

    Phil 12th February 2014 at 3:23 pm

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