A strange mixture of terror and outrage floods your brain when your doctor says, “I had a patient like you, and when she missed her meds, her heart and lungs stopped. She died.”
Right. I get it: I need to take my epilepsy medication religiously.
It had already been a long road to this point. Two major nighttime seizures, two ambulance rides, claustrophobic brain scans, and an intense three-day relationship with 20 itchy electrodes. They revealed a lot: my heart sank as I was officially diagnosed with nocturnal frontal lobe epilepsy.
The drama of a life-threatening event is less of a sexy Grey’s Anatomy storyline and more like an emotionally exhausting House episode.
There was also the fear this was the reoccurrence of a different brain disorder, hydrocephalus, which I like to think of as my neurological illness ex. This genetic condition required surgery during my final year at university to reduce cerebrospinal fluid build-up on my brain and stop, well, death.
Somehow, everything is now ticking along smoothly. The seizures weren’t related to the resolved hydrocephalus, and my epilepsy, which only occurs during sleep, seems to be managed by medication. But even with an ICU-chic skull dent and meds keeping my after-dark neuron dance parties in check, I still occasionally feel the ripples of anxiety, helplessness and anger that ride on the shadowy back of chronic illness.
New recruits in this “forever sick” club often set about making changes to better manage these emotions and the lifestyle impacts chronic conditions can have.
After my epilepsy specialist delivered treatment guidelines by talking about his dead patient, I quit my job as an editor. The position was sought-after, but I wasn’t very happy in the role. But the catalyst for quitting wasn’t only a career move – the idea I might drop dead as a 25-year-old reminded me I was at a life stage where I could mix things up for a more appealing present.
“We call it mortality salience,” says Dr Peter Baldwin, Black Dog External Fellow and lecturer in clinical psychology at Victoria University.
“When the fact you are going to die is brought into stark relief, it suddenly becomes an important decision-making factor. It really changes the way people think: for some people it’s very scary and horrible, but for others it reprioritises things.”
My experience is far from rare. According to the Australian Institute of Health and Welfare, almost 50% of Australians have a chronic condition. This increases to around 80% of people over 65, but surprisingly younger adults aren’t far behind the national average. In 2019, the Australian Bureau of Statistics reported approximately 30-45% of Australians aged 15-34 had one or more chronic conditions. While not all of those are potentially life-threatening, they still take a toll.
For Brisbane student Susie Ray, 22, the path to diagnosis and managing multiple chronic conditions had many roadblocks. Throughout her adolescence, doctors couldn’t pinpoint the cause of her racing heart, nausea, severe exhaustion and other life-altering symptoms.
Ray says doctors told her, “‘We’ve done all the basic tests, you haven’t got cancer, you’re not dying, there’s nothing [obvious] that’s wrong with you.’ So I just took that – I trusted the doctors.”
A chronic fatigue diagnosis was laid over her symptoms, but after finishing high school, she and her family investigated further. In 2016, Ray was diagnosed with postural orthostatic tachycardia syndrome (POTS), which can affect all unconscious bodily functions like heart rate, blood flow, breathing and digestion. It comes with a constellation of symptoms, but Ray says getting a concrete diagnosis was a monumental relief.
“Sometimes I felt like I was a second-class human, really weak. Everyone else could manage life but I couldn’t. To find out there were reasons why I felt this way was a really liberating thing,” she says.
But it wasn’t until 2019 that Ray discovered she also had endometriosis. This was the cause of other symptoms, including crippling period pain that regularly left her bedridden. Surgery is required to confirm an endo diagnosis. Ray says having the procedure – a clear signpost to the world of her sickness – ignited a flurry of concern she hadn’t experienced before.
“It’s a shit situation feeling like you have to prove something because no one can visibly see what’s wrong with you,” she says. “And you’re not being honest with how you’re feeling because you’re not expressing it to people.”
This pressure to present illness evidence is why Baldwin says we need “a revolution around how we think about health”.
“Invisibility [of an illness] can trigger in other people this idea that, ‘if I can’t see it, it doesn’t exist’, because that’s how we deal with health. In the ill person, it can make them feel like ‘maybe I just deserve this suffering, or maybe I am making this seem worse than it really is,’” he says.
Shaun Nicholls, a 32-year-old teacher from Melbourne, was diagnosed with cystic fibrosis (CF) during his final year of university. His chronically ill future contrasted dramatically with his travel plans and career aspirations.
“To the outside world, you’re a terrible friend, because you can’t always make your friendship commitments, you’re a liability in the workplace because you might feel great for a week, but then feel really crappy and you can’t work for two weeks,” he says. “The ties with your workplace and friends, they should be the things that really anchor you, but they are the things that are so difficult to have.”
Nicholls’ experience with CF is unusual: he was diagnosed as an adult despite displaying symptoms as a child, as well as seeing his sister Gemma live with the condition until it caused her death at 13. After going against his doctors’ advice and finishing his university degree, Nicholls is now a casual relief teacher. But he’s still angry.
“I’m angry that it happened to my family again. I’m angry that when I was diagnosed the doctors assumed I would just sit in my chair and see out my days. They didn’t see me as a person who had dreams, aspirations, interests, hobbies and passions. I was whittled down to Shaun with CF.”
Nicholls says he doesn’t want to hear stories about CF patients being “#grateful”, but instead about how negatively perceived emotions can be used to motivate people through the experience.
“When CF happened, it sort of gave me a new strength. My mum calls it the inner mongrel. It just hides inside and can come out and bite when it needs to protect itself.”
While we deal with the doubt, fear and loneliness that hides in the corners of chronic illness, Baldwin says many people can find joy in the process. “As the bumper sticker tells us, ‘shit happens’, and finding meaning amongst it is one of life’s great challenges.”
Like many chronically ill young people, I’ve taken that shit and tried to use it as fertiliser in a new garden of life goals. “People can really learn what they’re capable of and to advocate for themselves, which can translate to lots of areas of their life,” Baldwin continues.
In my case, knowing my own worth is chief among my new priorities. But just as important is leading my actions with empathy – you never know if your work rival or the friend you’re frustrated with is going home to a hidden illness.
Source: TheGuardian
