Bryan is the Company Secretary and Data Protection Officer of a financial services mutual group. He previously held senior governance and secretariat roles in a range of leading not-for-profit, public sector and commercial organisations.

He has been a charity volunteer since he was a teenager and is proud to be a trustee for Epilepsy Scotland and ICUsteps.

Here Bryan shares his experiences of epilepsy and reflects on his career.

When were you diagnosed with epilepsy?

I had a tonic-clonic seizure during my first university exam, following which I was diagnosed with a benign brain tumour. I had successful neurosurgery in 2001 and 2017.

I’ve had irregular tonic-clonic seizures, mostly when sleeping, since my diagnosis. I’ve had four status epilepticus seizures and ICU admissions since 2017, most recently in February 2021.

How do you feel your diagnosis impacted your life?

In some ways, I owe a lot to epilepsy. If it wasn’t for my first seizure, I’d probably not have received early treatment for my tumour.

This does not mean life has been easy: I missed two years of university, which affected friendships and delayed the start of my career.

I had to return my provisional driving licence, which means I’m still dependent on others for travel.

I have a Disabled Persons Railcard, but this comes with its own stigma.

More generally, seizures can leave me physically and mentally exhausted for days; with status, this increases to many weeks.

My social life is planned around strong medications, driving restrictions, alcohol limits and sleep routines.

There are also the side effects of these medications; the increased costs of travel; and the logistics and stress of regular visits to my epilepsy specialists.

But the biggest impact for me is uncertainty. Uncertainty about being alone. Uncertainty about the timing and impact of the next seizure. Also, uncertainty about what’s coming next.

Do you feel your diagnosis has had an impact on your career?

Thankfully, my experiences as an employee with epilepsy have always been positive.

I can though associate with career challenges related to an epilepsy diagnosis. Regular and/or long-term leave means you can fall behind on objectives.

You miss opportunities to learn; develop working relationships; to build your self-confidence.

Medications and side effects can impact your memory. Commuting to work can be much more challenging.

Even at the most basic level, time is needed time to recover fully from seizures and to attend clinics with specialists.

The increased use of virtual appointments has made this easier, but the benefits of face-to-face care and treatment are lost.

What type of support have you received from your employers to support you in your career?

My employers have always supported me and my epilepsy.

This has included: time to recover, physically and mentally, from seizures and hospital admissions; attending clinics during working hours; initiatives to encourage a good work/life balance; empathy and support from managers and colleagues; epilepsy-specific training for first aiders; understanding of challenges associated with early or late work travel; and lone-working policies and processes.

Some employers required me to attend pre-employment health screenings. In my experience, these sessions were too general and failed to consider my own condition and the knowledge of my specialists. I’m not sure how they could benefit me or my employers.

What do you think employers need to do to better support people with epilepsy?

In addition to the support I’ve received, I’d encourage employers to provide epilepsy awareness training, for the benefit of their employees and customers, and to seek accreditations demonstrating their commitment to diversity and inclusion.

Training sessions can be provided by Epilepsy Scotland, you can find out more here.

What advice would you give to anyone with epilepsy worried about their career prospects?

 Seek specific advice from people with epilepsy, your epilepsy specialists, or get in touch with Epilepsy Scotland’s free and confidential helpline.

Consider being open and honest about your epilepsy.

Find ways to improve your employer’s and colleagues’ understanding of epilepsy. Accept your own condition and recognise your limitations. Say ‘no’ when your physical or mental health is at risk.

Remember your employment rights – see Epilepsy Scotland’s helpful Occupational Health Guide.

And if your employer fails to support you and your epilepsy, they’re probably not the right company for you.