I always used to wonder what to do when I came across a person with a disability – whether I should offer help voluntarily or not. Then, on the night of April 3, 2020, I began my own personal journey into finding out.
Amid a worldwide coronavirus lockdown, I was hospitalized due to an emergency: my first unconscious seizure attack. I was given first aid and tested for COVID-19, which turned out negative. From the fall, I had fractured my left rib and backbone. My brain, along with other organs, was scanned for any abnormalities. The reports were normal, and I was given seizure medication.
Through the weeks and months that followed, my experience with learning to live – and work – with epilepsy has taught me what people with mental and physical challenges need: empathy and support to be all they can be in their personal and professional lives.
Adjusting to a New Normal
Once released from the hospital, the daily life I knew until then vanished. I was in a Catch-22 situation: I had many unanswered questions on my mind, which I wasn’t supposed to disturb by overthinking. I was out of work to recuperate for just a few days; my return was a welcome distraction from bouts of anxiety and motivated me to perform better. Yoga, meditation and stable support from family and colleagues also helped me calm down and continue with my “new normal” as a person, parent and professional.
While there were food and driving restrictions, nobody was traveling or eating out anyway at the time. And while my medications initially caused mood swings, I never consciously allowed that to influence my behavior at home or work.
But then, in November 2020, I experienced a second episode during sleep. Since it wasn’t genetic – and there wasn’t any structural damage in my brain – my doctors concluded that I have idiopathic epilepsy, which is possibly influenced by emotional trauma (I had a history of stressful life events). I’m on continuous medication now, and my condition has been under steady control since then.
Epilepsy is a fairly common neurological disorder that affects more than 50 million people worldwide. It isn’t contagious, it doesn’t make people any less smart, and its cause is still unknown in about 50% of cases globally. Most people with controlled epilepsy can go about their lives as people without it can.
However, myths about seizures and discrimination can make employees feel left out – and they may be reluctant to inform their employers or even prospective employers of their condition out of fear of losing their job or being excluded from growth opportunities.
Self-care Strategies to Thrive in the Workplace
In addition to monitoring their health, people with epilepsy must focus on their overall wellness and daily routines, as well as identify and avoid triggers. I call it PCP (personal/professional continuity planning), just like BCP. Here are a few self-care strategies:
- Review job-related risks with your manager and have open conversations about what could be done in terms of improvement or support.
- Consider telling co-workers about your condition and educate them about seizure first aid.
- Use the lift, not the stairs. If you have to climb, climb only as high as you can safely fall.
- Try to keep consistent working hours so your sleep/medication cycle isn’t disturbed.
- If you’re sensitive to light, try to limit exposure. Take short breaks from the screen and change your settings according to your comfort levels.
- If stress is a trigger for you, look at ways to reduce stress on the job and restructure work-life balance.
How the Workplace Can Help
- Create a comfortable first-aid space to rest and recover within immediate reach.
- Give extra time to people with disorders such as epilepsy to perform their work and process information if they suffer from memory issues due to side effects from their medication.
- Provide work from home as a permanent/part-time option.
- Offer unpaid leave for treatment or recuperation after a seizure (with a return-to-work policy).
- Adjust certain triggers (light/temperature) when required.
- Open wellness centers that offer mental health help to supplement physical well-being.
Some of these accommodations can be documented and applied on a case-by-case basis and kept confidential between the employee, immediate supervisors and human resources. It’s up to employees and organizations to agree on measures that are both feasible and sensitive to the needs of the employee and the business.
Digital Devices Offer a Modern Rx
It took a while for me to make peace with the tremors of my newfound disorder. But life goes on. Nowadays, I’m as dependent on the digital world as on the physical world for lifestyle support. In fact, digital tools make my life much easier by doing some of the rote things I used to rely on my brain for. For both my work and daily life, I record notes, reminders and my routine tasks in task management apps like Trello, freeing my mind for the creative and innovative work that I love.
On my Apple watch, I have an app that detects seizures using motion sensors or heart rate sensors and alerts my emergency contacts during my sleep or otherwise. I have updated my medical information and emergency numbers on my phone, which is accessible to anyone in the public even when the phone is locked. I also use another epilepsy app to input, track and monitor my health data to review with my health professional. Last but not least, I have educated my family and friends on first-aid techniques as a precaution.
Importantly, I’ve learned to let go of all that is out of my control, and have taken charge of everything that I can to pursue a better future. While I can’t drive for another few years (one of my favorite things to do), I’m looking forward to steering a healthy and happy journey onwards and upwards from the driver’s seat of my life.
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