While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In this mindbodygreen series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.
My story really begins with my older sister, who was diagnosed with a severe, drug-resistant form of epilepsy when she was just a baby. Her illness was very much at the forefront of my family’s lives. At the age of eight, my sister’s epilepsy became so unmanageable that she had to move away from our home to live with full-time care.
Growing up amid my sister’s health struggles, I was considered the cognitively “healthy” sibling, as it were. So when I began exhibiting symptoms as a teenager, it was a true shock to everyone.
My experience with epilepsy
At age 13, I was diagnosed with juvenile myoclonic epilepsy (or JME). It’s not nearly as severe as my sister’s form of the condition, but nevertheless serious.
When I was 15, I experienced my first tonic-clonic seizure (also known as a grand mal seizure), which causes muscle contractions along with loss of consciousness (probably what someone might imagine when they think of a stereotypical seizure). At that point, I was put on medication for my epilepsy.
I had a lot of side effects as a result of this medication, and I wasn’t really open with anyone about what I was going through. I experienced a lot of anxiety, hyperactivity, and insomnia. Plus, the moment I was put on medication, my quality of sleep was severely impacted. I felt very low, and unable to concentrate—which are symptoms of epilepsy, but I believe they were exacerbated by the medication, as well. Considering sleep deprivation and stress are two major triggers, this was all very concerning.
While people primarily associate my condition with seizures, it’s also about living with the fear of a seizure. In my case, I was having close to one grand mal a year, but there was an incessant fear of getting one at the wrong time, or what might happen as a result—falling and hitting my head, losing control of my bladder, experiencing it when no one was around.
There are also different kinds of seizures, beyond grand mal. I also suffer from myoclonic jerks, which are little interruptions in the brain—I always describe them as like matrix interruptions, when my hands will sort of jerk open. I also experience what’s known as an aura, which looks like I’m zoning out, but really it’s a type of seizure. Plus, people who are epileptic have photosensitivity, so I needed to be wary of bright flashing lights, to avoid triggering a seizure.
Each time I had a seizure, I felt like a piece of myself had been robbed in some way. Each one caused brain damage to some degree and, in my experience, a loss of confidence. It feels like your whole world has been turned upside down. It’s absolutely terrifying to wake up and see people above you, asking if you know who they are, and if you’re okay. In those moments, you have no idea what happened, apart from your pounding headache.
There are just so many layers to it that people who don’t have this condition may not consider. And, unfortunately, epilepsy comes with a horrible stigma, so I pretty much kept my invisible illness to myself for years.
How I reclaimed my confidence and autonomy
In my twenties, I sort of stumbled into becoming a DJ—which is perhaps the most surprising and ill-suited career path for someone with epilepsy. There are lots of late nights, flying, and, of course, bright strobe lights. However, it was something I was extremely passionate about and drawn to, so I decided not to let all those other factors stop me.
As a DJ, I began to amass a bit of a fandom. So when I decided to share with the world that I was epileptic, I really wanted to use my platform to raise awareness about the condition—not just for myself but also for my sister, and everyone else who dealt with the stigma around epilepsy. Through my work, I wanted to give the illness a voice and show that I’m someone with epilepsy who is still traveling the world, DJing, and creating an incredible career. Sure, I’ve had to ask a few gigs to ditch the strobe lights, but otherwise, I could lead the life I truly wanted to live.
Another thing I try to advocate for is awareness around personalized treatment options. About seven years ago, I was introduced to cannabinoids, a compound that’s present in the cannabis plant. After giving it a try, I discovered I was one of the extremely lucky epilepsy patients who found relief from seizures with the help of cannabinoids. Under the guidance of my neurologist, I was able to wean off all the pharmaceuticals I’d been taking since I was 15 years old. At the time, so many people said I was being irresponsible, and it was dangerous—but I could tell immediately that this was a really effective medicine for me. It also treated a lot of comorbidities I was experiencing as a result of having epilepsy, like insomnia.
I often use the analogy of Humpty Dumpty: My brain felt so fragmented, like little, shattered pieces; then when I began using cannabis as medicine, it was as if I put everything back together again. That sensation applied to my memory, my concentration, and so much more.
Of course, cannabis is a drug, and should still be treated as such. Like most drugs, it may work for some people, but not for others. And I’ve been very lucky that it has been an incredibly effective treatment for me. Fast-forward, and I’ve been seizure-free for seven years.
Why I’m passionate about my path
I think music is a universal language that we speak. Whether or not we share the same taste, it’s a language that the majority of people on this planet can share. It’s the only thing that can completely change the way we feel in just one or two seconds. It can bring up deep feelings that turn you inside out emotionally.
As a DJ, you have the opportunity to be in charge of that emotional journey. You can see the impact of putting on a song that encourages people to get up and dance, or that puts tears in their eyes.
I see that a lot with my sister, who has lived a really challenging life, and spends a lot of her time in and out of intensive care. When she was born, doctors said she wouldn’t make it past 18 years old, but she’s still with us to this day at age 40. It’s really a miracle that she’s still here. She has lived a very challenging life, but she is the most wonderful, pure soul you’ll ever meet—and I feel very grateful to be her sister.
And the one thing that always lights her up and puts a smile on her face is music.
Source: mindbodygreen.com, Chelsea Leyland