There is quite a lot of talk at the moment about neuro-diverse conditions, so I wanted to share my own experience.
Like one in every 103 people, I was born with epilepsy.
The frequency and severity of my seizures, combined with medication, have left my short-term memory permanently damaged. When a seizure comes I lose consciousness, and with it all memory of the event: how, why, what and when. This can be really frustrating. Indeed, it’s common for people with epilepsy to experience bouts of anger, anxiety and depression.
I have been working at the Defence Geographic Centre since 1991. There are around 300 of us here, mainly civilians. We provide geographic information, advice, products and services to the MOD and HM Armed Forces. My role includes intricate analysis of data and other geographic sources, which feeds into those products. Accuracy, as you can imagine, is vital.
So, given my condition, why have I been doing this kind of intricate work for the last 25 years?
Put simply, it fits perfectly with how I approach life.
Over the years I have developed a super-organised and meticulous approach to even the smallest tasks. I have had to work like that to cope with my memory loss, but it just happens to be a mind-set that’s also a perfect fit with the work. Whether I am post-seizure or working on products, I follow precise standards, specifications and operating procedures, piecing together lots of fragments of information and data to build a complete picture.
For colleagues, my condition brings challenges. They recognise what I can do for Defence, but they have to accommodate my memory lapses, walls of Post-it notes, and my occasional seizures. I found the new clear-desk policy here quite stressful. So now I put my notes on a board, which is put away every day with manuals and operating procedures before I leave work.
I think it’s vital that people with hidden conditions talk about them, and reach out to others in the same position. Since joining the centre I have always given short talks on epilepsy to colleagues, and I get a good response. I have now developed this into a longer presentation which I am ready to give to larger audiences elsewhere in the Civil Service.
I have no idea who else in the Civil Service has epilepsy, but I am sure there must be others. It would be great to meet them. If we can find a way of linking up to exchange ideas and experiences, perhaps we could also help to improve corporate knowledge about epilepsy and any compensating strengths that come with it.
Do you have any experiences of epilepsy you would be willing to share? Or would you like to find out more about it? If so, post a comment below and I will do my best to get back to you. If you prefer to keep your enquiry private, you can email cswebsite@cabinetoffice.gov.uk and your message will be forwarded to me.
I look forward to hearing from you…
10 comments
Comment by Mark Auckland posted on
I wasn't born with epilepsy, it developed in my mid-20's and so far my consultant has been able to limit it to absences but not totally control it. I work at the the Office for National Statistics and am open with my team and try to help others understand the condition. I do my best to 'get on with my life' and since being diagnosed have finished a PhD, run in the North Run, taken up painting and salsa dancing, and visited my sister in Australia. I am interested in how your structured routines help you recover effectively as that is often the most annoying part, having to wait for various functions to come back on line.
Comment by Claire Bonney posted on
You are quite right, I always think do not dwell on it. I have always just had a way of 'getting on with my life'. People worry about us with epilepsy and there may be risks, but if you think 'risks could go on for ever and everything could be a risk, it is best to just get on and do things. Especially the things that make you happy and to do the things you always wanted to or dreamed of. I have done a tandem skydive and Nevis Arc swing across canyon in New Zealand. I walked and trecked the Milford Track and climbed up a volcano too. I went with someone and would never say no to doing these things.
Comment by Ian Scott posted on
Hi Claire
I had been suffering from 'blank moments' for several years which I had just put down to the side effects of medication for High Blood Prssure/High Cholestoral but on the 5 March 2015 whilst driving to work I had a Brain Seizure which resulted in me laeving the road and crashing in to 6 parked cars righting my car of in the process.
Although no one else was injured and I escapsed with severe briusing further tests and MRI scans showed an abnormality to my Left Front Temporal lobe which they think is a Benign Brain Tumour but will not do an biopsy until it changes.
I am now being treated as Epileptic but thankfully with no more Seizures/Black-outs and I have finally returned to driving after 16 months which was both exciting and terrifying!!!.
The information provided for Epilepsy is a bit depressing with patients becoming withdrawn and even suicidal, but once I knew the medication was keeping things under control I became more adventurous and now at week-ends/on leave I go out walking for hours/miles in the wilds of Northumberland/Scottish Borders with the thought that 'if it happens, it happens' and not to dwell on it.
Comment by David Clinton posted on
Hello all. I am hoping to do a stand in mid August in Waterview Park about Epilepsy. I have the backing of our wellbeing committee and two charities. I am looking for help in the area and would really appreciate it if I could contact anyone local who has the same condition if they were willing.
Comment by James Thomas posted on
Hi Claire,
I work in DVLA in Swansea & have suffered from epilepsy for the last 10 years or so. Similar to yours I lose all awareness during the seizure & all memory of the event - v frustrating & sometimes embarrassing (known 2 dribble during the seizure etc ?) . Always found it best 2 be open with colleagues as I imagine it can be scary for them if they are unaware of what 2 do! Happy to discuss
Comment by Claire Bonney posted on
Gurneen,
I would be happy to contact and speak with you. The blog team have supplied your e-mail address and I shall be in touch.
Claire
Comment by Gurneen posted on
Hi Claire, Iam civil servant in DWP and would be interested in knowing more about this topic.
Comment by Tim Motz posted on
Hi Claire
Thanks a lot for this article. I have focal epilepsy and a side-effects from my drugs. I am open with my team but also keen on the idea of sharing information more widely.
Tim
Comment by Claire Bonney posted on
Thanks Jackie. Any particular area of epilepsy life you wish to discuss?.
Would you like advice or to share stories? Or about managing work and epilepsy. Either way, I will share all three subject areas. I shall e-mail you.
Claire
Comment by Jackie King posted on
Hi Claire, I am a civil servant based in DWP in Birkenhead. I also suffer from Epilepsy and so does my daughter. Happy for you to contact me to discuss ?
Jackie King