I’ve grown up subconsciously being told to ignore the presence of my epilepsy.
The people I love want me to lead a normal life, but life isn’t normal.
They rarely ask me about my health and tend to avoid the topic altogether. I think they’re afraid of what it means.
So they treat me like everyone else. This can be a good thing and a very bad thing.
Sometimes my life is normal, most of the time actually. I love baking brownies, playing on Sims, and having cups of tea with my sister. But there are moments, glitches when things temporarily shut down.
And everyone loses control.
People become so adamant that everything is fine, hunky-dory, nothing to see here. The problem is, by treating me as normal, my disability gets ignored.
It feels like a huge part of me simply doesn’t exist to the outside world.
A moment in the shoes of an invisible illness
I have absence seizures, a form of epilepsy when someone temporarily loses partial consciousness.
Instantly, this freaks people out, or they become curious. Curious is better.
I explain it often looks like I’m in a daydream that I can’t be snapped out of. Then you have some people who say, “I do that all the time. Do you think I have epilepsy?!”
No Susan, no, you do not.
When I’m in an absence, all my senses become temporarily impaired. It’s like I hear everything from very far away, through a tunnel or muffled pillowcase. Things around me become blurred or flicker in and out of my vision. That’s because my eyelids flicker at rapid speed.
I feel extremely unsafe because I know I’m not entirely conscious. So I get defensive easily. I jump at small noises, back myself into the corner of a wall, and when I return to the present, I feel disoriented and confused.
All this happens in a matter of minutes or even seconds. But it happens multiple times a day.
Imagine trying to make yourself a cup of tea and then losing consciousness for five seconds. You regain it, put the teabag in the mug, and lose consciousness again. You come around, and you’ve walked out of the kitchen into the living room.
What were you doing?
You can’t remember.
A few minutes later, you remember, ah yes, a cup of tea. Only you lose consciousness while the kettle is boiling.
And the cycle repeats itself.
It’s not like that all the time. Some days I hardly notice my absences. Other days I hide in the toilet and cry. Cursing myself and wishing I could do simple tasks, hold conversations or be the best that I know I can be.
Occasionally, it’s loud and dramatic. There are injuries, ambulance calls, and blackouts. Friends and family rush to console me and worry over my safety. Then the dust settles, and everyone gets back to their lives. While I carry on, with a few absence seizures a day, or crying in frustration in the toilet cubicle until the time comes when everyone remembers again.
The following is a potential trigger for anyone who has been involved in an accident.
A few years back, I had a seizure in the bathroom.
I was alone.
I knocked my head against the corner of a wall and split it open. I seized for a few minutes on the bathroom floor and fell unconscious from head trauma. Luckily, my partner called to check-in, and I picked up and sounded confused. He called an ambulance, and I was taken to A&E.
I realize how lucky I am. I was young and resilient. It could have gone differently that day, in so many ways.
I am grateful to be alive, and I live each day pursuing the things I love. Because if there’s one thing epilepsy has taught me, it’s life is too short.
Why I struggle to accept my invisible illness
Even as I write this, I can feel my heart beating, and I need to remind myself to breathe. Because it’s painful. Rarely does anyone allow me to talk about it. Rarely do I have space to tell someone how I am managing a huge part of my life.
I am seen as less worthy in society. I can’t keep up with long hours or a demanding workload. I regularly ask for support from my partner, friends, colleagues, even strangers. I have been taught that reaching for help is a sign of weakness, and vulnerability is not valued.
I don’t accept it because several times a day, I lose control of my body. It’s a part of my life.
And nothing changes. Not how I am treated, not the workload I am given, nothing.
Like I said, this can be a good thing and a very bad thing.
So I walk around with this weight on my shoulders, not sure how to carry it and not sure how to communicate to other people what I need.
Because that’s the difficulty with this condition, it’s invisible. A blessing and a curse. It means strangers don’t stare, and I don’t require any special equipment.
But it means they forget too.
They forget that sometimes, being made a cup of tea is the most wonderful gift in the world. They forget that on some days, I’m just not as capable as others. And they forget that it would mean so much, just to ask, “Hi Emma, how’s your health?”
All that being said, this is not a sob story. Yes, sometimes there are hard days, weeks, months, or even years. However, without my epilepsy, there are so many lessons I would never have learned.
Why I am grateful for my condition
I have incredible friendships.
My girl gang is tight-knit and undefeatable. They have seen me have a tonic-clonic seizure on my 21st birthday and phone calls when I’ve said I’m too tired to carry on with life. They always sit and listen, respect my pain and honor the fact that on some (okay, most) nights out, I need to be in bed by 10pm with a cup of tea.
My partner loves me unconditionally.
It’s terrifying falling in love, but falling in love when you have a long-term health condition is a whole other story. You need to rely on them when you become both physically and mentally vulnerable. Sometimes, you have to ask them to do things a child could do, like shower you, dress you, and remind you to eat. My partner has done all of these things and with gentle compassion. The more unconditional love he shows to me and my epilepsy, the more I am learning to love myself.
I am learning how to balance my life with my condition.
Life is all about balance. My counselor said, “it must seem very important for someone like you, to have a routine. When everything else in your life can suddenly become so chaotic.” I manage my time, honor personal boundaries and strive to create a lifestyle that suits me and my epilepsy.
Instead of trying to change the world to suit you, why not create your own?
I value compassion and forgiveness.
Tara Brach’s book Radical Compassion and Radical Acceptance taught me how to respect my body’s feelings. When you have a health condition, or even a short-lived injury or illness, it can be easy to reprimand your body for betraying you.
Instead, I place a hand wherever I feel the pain, emotional or physical, and speak to myself in a nurturing voice. I tell myself, “darling, it’s okay. I feel your pain. If you’re angry, I forgive you.”
I have an appreciation for life.
How you can help someone with a long-term health condition
If you know someone with a health condition, invisible or not, you don’t need to pity them, and you don’t need to be afraid of offending them either. The offense happens when you refuse to acknowledge that their condition exists. It’s as if you’re saying, “your disability doesn’t matter to me, and I don’t care enough to change my behavior to support you.”
That probably isn’t true. You just don’t know how to be around them.
So what can you do?
Treat them with compassion, like you would treat someone you love.
- Ask them how their health is.
- Gift them with small acts of kindness; a cup of tea is always welcome.
- Don’t take their disability too seriously. Let them be your guide!
- Give them space to talk.
- Get curious but respectful. See it as an opportunity to learn something new.
- Assume they can, not they can’t.
- If you see they are struggling, offer your support instead of waiting until they have to ask.
To all of you who already do these things, thank you. I remember each and every one of you.
And to those who don’t, please don’t be afraid.
To be afraid is to live in fear, and how can we love someone if we are afraid of who they truly are?