Life and work with a hidden disability

Juggling life and work can be tough. Throw in a chronic illness and it amplifies that struggle quite a bit more. 

Make that illness invisible and it can crank it up another notch on the struggle scale.  

I’m Katie, and I have epilepsy. Many folk hear the word ‘epilepsy’ and instantly think of flashing lights and convulsive seizures, which isn’t always the case. I have focal seizures, which are triggered by lack of sleep, being run down and being stressed. I’m a bit of a newbie when it comes to having a hidden disability; here’s my story.

Discovering I had a disability and getting a diaognosis

My hard work from my 20s (around necking tequilas on a school night) was starting to pay off. I had a fast-paced, corporate marketing job that I loved. I was embracing my independence; earning more, having more responsibility, and being happy at work. I was traveling, taking the lead on organising global events and had a voice in decision-making for big brands.

Then I turned 33 and, out of nowhere, I had a seizure.  

In April 2018 I started having ‘funny turns’. I’d lose focus, say strange things, shake my head and cover my face. 

I didn’t know I was doing it, but others had started to notice and ask questions. I shrugged it off and carried on. Then, one day, during a team meeting, I stood up, walked out of the room and sat at a colleague’s desk instead of my own. I snapped out of my daze and had no idea where I was. I took some time off work and visited various doctors who couldn’t quite figure out what was going on. The words stress, anxiety and depression were thrown around. It just didn’t make sense. I mean, when I wasn’t having these ‘episodes’, I felt okay-ish. 

Then one night, on the way home from the chippy, I had a ‘fit’. I was unconscious, seizing, frothing at the mouth and making noises like a strange Glasweigian zombie. I woke up in hospital with no idea what had happened. 

My fish supper was ruined and I was scared.

Things moved pretty quickly after that. I was given appointments for EEG tests, MRI and CT scans. Eventually, I met with a Neurologist and, in October 2018, 7 months after it all began, I was diagnosed with focal epilepsy*. I was put on medication and immediately lost a chunk of independence. I had to sell my car and, until the drugs kicked in, I couldn’t be left on my own. 

I went back to work, but I couldn’t trust my own body.  

How my hidden disability has affected my work life

Epilepsy isn’t just about seizures. There are side effects caused by medication. The loss of confidence and self-esteem. Memory loss. 

Mood swings. Feeling physically and mentally exhausted; I was once on the brink of falling asleep at my desk. I often feel like a burden; asking the same questions repeatedly and relying on people for lifts. Then there’s the fear of people thinking you’re faking it. A colleague once said “You don’t look sick. I zone out sometimes too, but I just get on with it.” 

When I was first diagnosed, one of my biggest worries was having a seizure while being in a room full of people. I would have nightmares, picturing myself in a conference room; a hush over the crowd as a schmoozy CEO-type gave a presentation about synergy, P&L statements, or something equally as boring thrilling. I’d see myself having a seizure; standing up, shaking my head and saying something weird, with everyone turning to stare and whisper.    

Corporate environments and large meetings go hand in hand; skipping meetings wasn’t something I could do. I completely lost confidence in myself and became incredibly paranoid. Could I still do my job? Was everyone talking about me behind my back? Did I just have a seizure? The fear turned me into a husk of my former self and I was afraid to go to work. I would cry in the toilets multiple times a day and would rather hide away in a room and work alone than mingle with colleagues. Not a great tactic for teamwork, eh?

Epilepsy not only affected me but the people around me. When I wasn’t at work, I’d sit at home and cry. My partner once went out, only to return a few hours later to find me in the exact same place and position as when he left, a snotty, sobbing mess of a human.  

My seizures are triggered by stress, tiredness and being run down. 

This lovely new fear, sadness and paranoia stressed me out, which kept me awake at night and, in turn, made me feel run down. I stopped talking to people and deactivated my social media accounts, cutting myself off from friends and family. I lived in my own head with paranoid thoughts swirling around. I was exhausted and stuck in a vicious cycle. I felt alone, helpless and I knew that something had to change.

So I left my job.  

I took a career break to come to terms with my new way of living. Little by little, I let people back in. I found that talking about my seizures and educating people about epilepsy helped. My confidence started to creep back and I was beginning to feel like myself again.

In early 2020, I was ready to search LinkedIn and get my arse back to work when we were all smacked in the face with a global pandemic. The world shut down, people were being furloughed left, right and centre. 

With the uncertainty of what the future held, I stopped looking for an employer.

I decided to employ myself.

Finding flexibility in freelance life

So, here I am, flying solo as a freelance marketer. An ambitious move that was scary at first, leaving the safety of having an employer to become my own, but I haven’t looked back.  

I’ve learned a lot in the last year; mainly that I took so much for granted when working in an office. If I ever had an issue with my laptop or needed a software update, I could nip through to the IT department and have a tech-geek fix the problem. A lovely person with a head for numbers would sort out my taxes and expenses. I never ran out of notepads or pens; the printer would always be full of ink, I didn’t have to buy my own coffee, and my workspace would be cleaned once a week by a nice, chatty lady.

As a freelancer, you have to wear many hats. I’m no longer just a marketer, I’m now a Director of Sales, PR, IT, Accounts and Admin. Of course, you can outsource some of these jobs, but when you’re just starting out, financially, it may not be an option. If you can afford to, I would strongly advise you to hire an accountant (unless you are an accountant, in which case, carry on). Accounts are scary. I’m a words girl; numbers are not for me.

Freelancing may have added a shit-load of extra work, but I wouldn’t change it. Going freelance has allowed me to obtain somewhat of a work-life balance. My days are super flexible which means, if I am feeling completely drained, or have a crazy headache, I can take time to rest without feeling guilty. I choose my own working hours. I don’t work less, in fact, at times I work more, but I have that freedom of being able to choose when.

At first, I was hesitant about telling people about my epilepsy, but I decided to face it head-on, being open and honest with my clients from day one. 

I believe that it builds a trusting relationship right from the get-go and, as a freelancer, trust is a huge deal-breaker when it comes to keeping clients. I’ve accepted my disability and I’m happy to share stories with my clients, letting them know what to expect should I have a seizure. I explain that, although I am an organised person, I may ask some questions more than once, and I follow up every meeting with an email recap so I have everything on file.

I frequently talk about epilepsy on my social media platforms to raise awareness, and I’m always happy to answer questions. To help with my memory, I write everything down, keep my workspace organised and plan ahead. Post It notes and lists are my things.

Like everyone, I’m looking forward to getting back out there, networking, and meeting people face to face. I’m looking to ‘find my tribe’ with the help of platforms like the Creative Entrepreneurs Club.  

I’m set on not letting epilepsy control my life and determined to carve myself a successful freelance career. I own my hidden disability, it doesn’t own me.

Reasonable Adjustments for those in traditional jobs

Not everyone has the capacity to go freelance. If you stay in employment, there are still ways you can make your work life easier; having an invisible disability means that you may fall under the Equality Act 2010, a law that protects you from discrimination in the workplace. You can ask your employer to make ‘reasonable adjustments to give you some additional support and aid you in doing your job.

What are some examples of ‘reasonable adjustments,’ I hear you cry? It could be something as simple as moving to a different desk. A reduction in hours or working from home one day each week; asking for additional equipment to make your job a little easier. As per the name, your requests must be ‘reasonable’. Noise-reducing headphones and flexible working hours, yes, just don’t take the piss and ask for a private jet to take you to and from work.

For more information on ‘reasonable adjustments’, check out https://www.gov.uk/reasonable-adjustments-for-disabled-workers

Hidden disabilities – a beginners guide

Unfortunately, there is no ‘Beginners Guide’ on how to deal with being diagnosed with a hidden disability. I made that up. Sorry. 

There are, however, support groups out there who can help. If I’m feeling down, I’ll spend time checking out websites and Facebook pages such as Epilepsy Action, reading the stories of other people who face similar challenges and barriers. It reassures me that I’m not alone.

It also helps to speak about it. I made the mistake of shying away from the conversation when I was first diagnosed. I didn’t want to burden people with my fears and worries. In the early days, when I spoke about my epilepsy, I felt like it was ‘The Katie Show’, and I didn’t want the attention. I realise now that it wasn’t just new for me, it was new for my family, my boyfriend, and friends too. They were just as scared and upset as I was and wanted to do something, anything to help. They wanted to listen and learn and reassure me that everything would be OK.

Eventually, I came round to opening up about my epilepsy, and once I did, it felt like a weight had been lifted from my shoulders. I’m now confident to chat away to anyone who has questions about my seizures and how my diagnosis has impacted my life.  

You may feel vulnerable at first, but when you read, speak and raise awareness about your hidden disability, people will begin to understand what challenges you face and it’ll make life a little bit easier.   

So, that’s my story. I hope that it might help some of you, those with a hidden disability, to know that you’re not alone and those supporting or working with people who have hidden disabilities to understand what it’s like and how you can help us. If you’re interested in learning more about focal epilepsy, I’ve added some additional information below.

Connect with Katie in the CEC community.