By Em
I’ve been playing a lot of Fallout New Vegas lately. I’m pretty fine at it.
When you’re playing New Vegas, sometimes you lose track of things. You’re run-walking through the wilds of Nevada, dodging faction assassins and giant mutated bugs, when suddenly your health bar starts dropping, and dropping, and dropping—and then you’re dead on the ground in a dustbowl, screen freezing before it boots you back to your last save.
You might not even have known why.
That’s sort of how I explain the experience of living with a chronic health condition, or an invisible illness, to those who haven’t experienced it.
See, on the outside, my New Vegas character often looks just fine. Rugged, dirt-covered, and usually with bright pink hair, but, in general, fine. On the inside, though, they’re a hot mess of radiation poisoning, Cazador poisoning, and six different types of chems stacked on top of each other. They’re one bad knock from losing a leg.
And you’d never know. On the outside, you might look fine, but underneath, many, many things could be going wrong. That’s how I live my real life.
My name is Emma. I’m a theatremaker here in Pōneke, and my body is a wasteland.
There’s not been a day in my life since I was about seven or eight years old when I haven’t been in pain. I know that sounds melodramatic, but it’s true. Some days I can’t walk due to chronic fatigue, others my chronic pain beats a samba through my head till I get on the good drugs, others still I’m doubled over, aching cause I’ve popped an ovarian cyst.
And you’d never know.
Approximately one in four New Zealanders have a chronic illness or disability, and a lot of those aren’t visible. When you walk down the street each day, I guarantee someone you walk past is dealing with their own personal apocalypse, and just having to grin and bear it.
And you’d never even know.
Sarah* is a close friend of mine, and appears to be possibly the most put-together person I know. She’s stunning and talented, and is always off on some new, exciting adventure. I love her and I envy her, and she’s also got chronic health conditions and neurodivergencies that constantly affect her life.
“I didn’t know I had ADHD until a family friend got diagnosed at 50, and helped both my brother and I get diagnosed aged 30 and 32,” she writes. “We didn’t understand why we struggled with everything in our lives.”
Though her family tried many avenues to find some way to help her and her brother, it took a long time and a lot of money ($300 per prescription!) to find a medication that didn’t give her awful side effects. She finally completed this process only six months before she was also diagnosed with Chronic Pelvic Pain, which set her life off on another health struggle.
After so many challenges within the healthcare system, she’s come to a place of -not reconciliation- but understanding with her body. “There is still nothing that works for me now except adapting and trying to stay healthy and being kind to myself. My daily motto is, “I survived today.””
Sometimes survival is all we’ve got.
It’s tough when you look fine on the outside, but you’re crumbling inside. We’re in a culture where you just “soldier on” with Codrel, where your boss doesn’t care if you’re sick, and if your illness drags on, you become a problem.
Doctors don’t take you seriously if you look too put together, but if you look too rough, they think you’re just after drugs. It always feels like you’re doing life wrong, like you’re stuck walking this path alone.
Capitalism doesn’t care if you can’t keep up or if you look like you should be able to—but can’t. We’re not kind to folk who struggle with their KPIs, or find life a constant battle, and we’re especially unkind to those who seem fine but aren’t.
“People describe the phase after getting diagnosed as experiencing grief.” Sarah writes. “I feel sorry for the little child that thought she wasn’t good enough, that knew what she could do and couldn’t do it.” It is an endless frustration to have to justify your intricacies, to explain the experience of walking in a wasteland others can’t see, especially when there’s no cure out there.
And yet, we have to continue on.
I will never be well again. That’s something I’ve had to reconcile with. No matter how things look on the outside, how well put-together I seem at events or in the office, I’m living in discomfort a lot of folks will never be able to understand. On some days, my HP is really, really low, and I’m suffering under debuffs most people won’t ever be able to imagine. The world, at times, really fucking hurts.
But yet, we continue. We have to.
One day it’ll feel less like surviving, and more like living. I promise. You just need to find your way there.
I’m hardly one to give advice for any other folk living with the weight of chronic health conditions, invisible illnesses or invisible disabilities, but know this. There are those out there who are there for you; who will listen and will hold your hand in the night.
The isolation that you feel isn’t real, and by speaking up and being honest about our limitations, we make the world better for others who are struggling through the same things. Kindness and empathy for others; at uni, at your job, with your hobbies, in your flats or relationships, goes a long way to alleviating the pains that medicine can’t solve.
You will find your community, you will find your people, and you will survive this wasteland.
*Name changed.
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