Existing with a disability or chronic illness adds a whole other layer of management and self-care that fully-abled people will never quite understand.
But what if this disability or illness isn’t visible to those around you? How much do you share with your boss and workmates? What happens when you need to take time to take care of yourself?
It’s a very tricky thing to navigate, and it’s incredible the amount of people that wrestle both their work life and sometimes-challenging health. If you don’t have to do this yourself, chances are there is at least one person at work who does.
PEDESTRIAN.TV spoke with a range of people with different invisible disabilities and chronic illnesses about how they manage their work, their life, and what they do to juggle the most demanding parts of their lives.
Emma works in the AFL’s media department in Melbourne, and manages the high-stress, high-demand job with her ongoing health struggles.
On a day to day basis, she’s working hard on footy broadcasting, websites, and clients whilst also juggling Meniere’s Disease (which affects her inner ears), IgA Nephritis (which affects her kidneys), Menorrhagia and Dysmenorrhea (chronic pain from her period), severe chronic back, neck, and knee pain, and arthritis forming in her joints. She’s 26.
On top of all of these physical things that affect her daily ability, Emma also manages her diagnosed Borderline Personality Disorder (BPD) and Post Traumatic Stress Disorder (PTSD).
It’s an absolutely whopping amount of stuff to have on her plate, and she makes sure she takes time to take care of herself when needed.
My kidney issues are really touch and go, I just have to make sure my body stays healthy and pick up on any signals that I can feel will turn into an episode of the disease, which is similar to how I manage my Meniere’s.
The days that I can’t manage to get out of bed, I still make myself, because I feel horribly guilty about taking any days off work ever, even though I have such a supportive and understanding workplace.
Emma says that her work is aware of her chronic pain issues and has given her nothing but support and assistance for her physical wellbeing.
She tells us that her favourite trick for when she’s not feeling her best is a good session of chick flicks with her friends, and copping some wisdom from her Dad on the phone.
Family is a big support base for Rory, who runs a hostel in Coffs Harbour with her dad, whilst also juggling her photography business, a two-year-old, chronic migraines, severe anxiety, and chronic pain from a traumatic accident in 2011.
I take a lot of pain killers, I use heat packs and mindfulness to try and get through the bad moments.
I also have a very supportive partner who completely understands my condition because he is an accredited exercise physiologist, and he is the first person to pick up the slack when I’m having a bad day.
Rory tells us that her pain medication is expensive and shitty on her body, but knows that she doesn’t have any other options at the moment.
Her specialists have told her that she’s ‘too young’ for pain treatments that are considered quite invasive, but also that she shouldn’t be taking medication for too long.
Unfortunately there’s not much Rory can do to alleviate the pain beyond her medication and listening to her body when it tells her to slow down, but her favourite trick for a tough day includes a massage, a bath, and a really good doco.
Auto-immune diseases also fall under the umbrella of invisible struggles that a whole lot of folks deal with every day.
These diseases are pretty much the body fighting itself because it thinks that various things like cells and organs (totally normal things that should be there) are enemies, and routinely attack them.
They’re exhausting, expensive, and typically invisible diseases, and they’re incredibly common – nearly one in 100 people have some kind of auto-immune disease.
For Alana, her body has been fighting itself since she was 13 (she’s now 31), and her day to day life is spent managing Inflammatory Bowel Disease and Liver Disease.
She works as a full time writer and has had workmates not realise how badly she can fall ill, and believe that her late-starts and regular leave are because of hangovers and holidays.
My favourite is when people think I’ve had two days off to go on a quick holiday, when in fact I’ve taken leave to have a liver biopsy or my annual colonoscopy
People often can’t see liver and bowel disease, so to most – I look entirely healthy – hence the snarky remarks when I’m off a few days at a time.
Catty from Adelaide has a more uncommon auto-immune disease, Microscopic Polyangiitis. Her body is attacking and scarring her blood vessels, meaning she has very low energy and needs to make sure she takes care of her body by taking time to rest while she’s in remission.
Sleep is extremely important for me, as is rest in general. If I don’t sleep at least 8 hours a night, I’ll get some sort of virus or infection.
Catty has a good relationship with her boss, considering she landed her job through a recruitment agency that focuses on people who have a disability that want to work.
There was a benefit to him because there’s a wage subsidy for hiring a disabled worker through this scheme.
But he also has a chronic illness and he wanted to give someone who needed a bit of help an opportunity.
Auto-immune issues also mean that Alana and Catty are more likely to get sick than their workmates, and those little sniffly colds that irk the rest of us for a couple of days can mean weeks of exhaustion and pain for them.
I’ve made a point of asking people who are sick not to come too close to me. Occasionally when the whole office has been down with a particularly nasty case of lurgy, I’ve asked to work from home.
Planning is also something that people managing their work lives and personal health have to work toward, and stick with.
Too many sources of stimulation – like many people talking at once, changing lights, and music or background sounds – makes this hard.
Sometimes I am unable to think clearly enough to have a conversation or finish simple tasks without stopping and calming down.
Similarly to Rory, William works a lot with their immediate family at an espresso bar in the Hunter region, which means they’re comfortable in knowing that their bosses support them if they need time off or need more work to keep them busy.
William tells us that their favourite things to do when they’re having a particularly bad mental health day is to look through photos with their friends and conversations that make them happy.
Reading through positive message conversations and looking at photos that include me and my friends helps to reassure me that these thoughts are unreasonable.
I think it’s the kind of concrete evidence that helps, where just trying to think positively does not.
It’s important we open up conversation about these kinds of things because we never know who can be struggling around us – even if they seem perfectly ok on the outside.
