For years, I didn't feel like illnesses 'counted', despite every aspect of my life being affected": People living with invisible disability often feel they have to justify why their conditions are "legitimate", Katie Brebner Griffin explains
It's a shame young people don't care about anyone but themselves," the lady across me complained to her friend, her eyes boring into mine.
She was clearly agitated that I'd taken a priority train seat meant for people with disabilities. As a relatively young person, without a wheelchair, cane or visible medical device, I obviously didn't have a disability, she'd decided.
The thing is, it was my first day back at work since my most recent week-long hospital admission. I'd spent five days having ketamine infused into my body to manage my chronic pain.
For the past decade, I've undergone a series of procedures to manage endometriosis, its associated pain and a chronic anorectal injury from sexual violence. The heavily stigmatised nervous system disorder fibromyalgia adds an additional layer of ongoing pain to the rest of my body, too.
I got off the train trying to ever so casually wipe the tears off my face, hoping other commuters wouldn't notice. The woman's remark played over and over in my head as I left the train station.
The woman on the train is far from the first person to assume I'm perfectly healthy because of the way I look. People do it all the time, because invisible illnesses and disabilities continue to evade general understanding or acknowledgement.
Here are a few things I wish my fellow commuters — and the rest of Australia — knew about living with conditions that can't be seen.
Asking 'how are you?' can be loaded
It's one of those peculiarities of Australian culture that when we greet each other, we ask how each other's going with no interest in the genuine answer. It's also one of those instances that can be really awkward if you have an invisible illness, disability or chronic pain.
You have to work out whether the person is just exchanging pleasantries or whether they really want to know how you're travelling. Regardless of which one it is, I often feel like I choose the wrong answer — either I'm being negative, oversharing, or I'm shutting people out.
Enter my favourite phrase: "It's nice to see you" — which is actually what people tend to mean most of the time. It avoids the mental gymnastics on my end and still conveys you care, regardless of whether my day is great or rubbish.
That's not to say you shouldn't ever ask "how are you?" If you're interested in how someone with an invisible illness or disability is faring, maybe don't ask as part of a large group discussion — it can make me feel a bit like a circus act.
Being open yourself first is a useful signal that you're up for a conversation beyond superficial pleasantries. Plus, hearing about your life is a welcome distraction from the endless tale of my condition.
Ditch 'you don't look like you…'
Often people are trying to be complimentary when they say things like: "You don't look like you've just had a spinal implant put in!" But in reality, I'm honestly not sure what anyone who has my conditions is "supposed" to look like.
These remarks feel invalidating, or ableist because I don't fulfil the outdated caricature of someone with a disability. Sometimes these comments are used to imply I'm "putting it on" — that my illnesses aren't real or severe, because you can't see them.
Chances are, you're probably talking about someone's resilience or positivity rather than their physical appearance.
Offer specific help over blanket statements
It's really kind when people say "REALLY, if there's anything I can do, just ask!" but it's one I never take up.
Taking the onus off the person with chronic pain makes your offer far more accessible, as calling or messaging someone to ask for help can be exhausting when so much of my time is already devoted to doing that with my treating professionals.
Simply calling or texting when you're already at the shops to see if you can get anything for your mate while you're already there is an easy offer to accept, as you're there and not taking a special trip on my account. This kind of support doesn't involve me asking you to go completely out of your way and doesn't make me feel like a burden.
Do your own research
I've only recently started publicly referring to myself as someone with disability. For years, I didn't feel like illnesses "counted", despite every aspect of my life being affected by my chronic conditions and multiple types of chronic pain.
I now regularly end up educating people on my conditions and the broad definition of disability. (In case you're wondering, People With Disability Australia defines invisible or "hidden" disabilities as disabilities that are not obvious. They include MS, arthritis, brain injuries, epilepsy, chronic pain, chronic fatigue, mental illness, and diabetes.)
These conversations are effectively asking me to justify to (usually) able-bodied people why I'm legitimate. They wear away at my resilience that's better saved for my next pain exacerbation, or surgery. If you want to know more, be proactive rather than asking people with lived experience to bring the mountain to you.
The #ThinkOutsideTheChair campaign is a good place to start.
Leave the medical advice to the pros
Mineral ointments that claim to "heal your pain naturally!"
Herbal teas that magically cure fibromyalgia.
Supplements and diet plans to "heal cycle dysfunction".
Crystals; books about "manifesting your best life"; reiki treatments involving energy healers and essential oils.
All these, and more, are sometimes pushed on people with chronic pain by well-meaning relatives and friends. Even though it's done with the best of intentions, getting advice about how to manage my pain isn't why I see my mates! Particularly when it comes to complementary or alternatives therapies — I can guarantee I've tried some version of the supplement, diet or treatment over the 10 years I've lived with chronic pain.
I also spend a lot of time (and even more money) at specialist medical appointments to hear their professional opinions, to make treatment decisions and make management plans. I don't want to explain why I choose to trust evidence-based measures, and frankly, I don't owe it to you or anyone else.
Listen, acknowledge — and don't assume
Like many people with chronic pain, I've had years of being in debilitating pain while not being believed by medical professionals. It makes you a bit desperate for people to understand what you're going through — the acuity, the inevitability of almost unbearable exacerbations, the sheer discomfort of it, how unpredictable it is.
Acknowledging the magnitude of dealing with this invisible burden not only makes me feel heard, but also tells me that my mates understand I'm not a flake or chronically unreliable. A simple "that sounds really tough" makes me feel acknowledged and that you understand my circumstances are difficult.
And finally, next time you see someone with a disabled parking permit pulling into a designated park — or a young, healthy-looking woman on the train going for that empty seat — don't assume you've got all the info to determine whether she's 'really' unwell.
I'll be the first to tell you: appearances can be deceiving.
Katie Brebner Griffin is a Melbourne-based social policy research analyst, and a lived experience advocate who appeared on ABC's You Can't Ask That S3E1. She also works as an illustrator under the name @ohkdarling.