Some days Erika England can move houses, other days she can't move from the couch. She writes about how she lives with her fluctuating conditions.
As I enter my sister's house, a cloud of shame hangs over my head.
It feels like forever since I've last visited and I've missed her terribly. Happy to see me, she acts like no time has passed. She is perfect — immediately offers me the most comfortable chair and a hot water bottle for my pain.
I feel like a fraud for blaming my absence on my health.
Did I look too perky on social media recently? Do I look like I'm flaunting my medication when I take it at the dinner table?
As the minutes pass, I grow fatigued. I'd metaphorically scream my love for my family from my rooftops, but I can barely muster up adequate input to the conversation.
Supplied: Erika England
)'My pain is real'
I have mixed chronic pain causing a grey-area disability.
Some days, I clean the house top to bottom. The next day I need my partner's help to put on my leggings.
When I say I can't do something, I often mean I'm technically able — it just causes several days of pain and fatigue.
My prolonged pain causes sensory and cognitive problems too. I randomly find noise intolerable, or my speech is jumbled up into word soup for a day.
On my worst days while couch-ridden, I'm reassured. I wasn't lying after all! This pain is real, it is disabling.
On a physically good day, self-doubt creeps up on me. I remind myself that my disability is only invisible to the naked, untrained eye. After surgeries, doctors have told me about the endometriosis and disintegrated spinal discs they observed. Scans have shown nerve damage, a blank space surrounded by healthier, illuminated nerves. My pain is real.
'I've learned to live vicariously'
I also feel defiant in my identity as disabled.
I'm frustrated that no-one can tell by looking at me. People lovingly wish I "get well soon" after hospital and sometimes I want to yell back that I will never actually get better.
I've had nurses withhold medication the day after spine surgery, despite being prescribed by the surgeon who knows me well.
When I can work, friendly co-workers ask what I '"did last night". I falter. I arrived home and collapsed into bed! It astonishes me that people have the ability for cooking or hobbies after work, but I'm excited to hear about it.
I've learned to live vicariously; I try to focus on the joy of receiving a postcard, not the bitterness that I never travel more than half an hour from home.
When COVID-19 stopped the world in its tracks, I felt guilty, as everyone around me was understandably struggling with the drastic lifestyle change, but my days were the same.
I'm at home most of the time, with my outings centred around doctor appointments. I initially reached out to non-disabled friends with advice on how I cope with being stuck at home; Celebrate the little things, like trying a new cereal. Find productivity in something small like colouring books or baking.
Later on in the year, I grew angry.
I kept hearing an echo of how "Humans aren't meant to live like this!" as people were acknowledging that this lifestyle has a cruel effect on our mental health.
I've lived like this for years. Suddenly, I watched workplaces, the film industry, restaurants and social groups find ways to reach people at home. Accommodations that disabled people have continually been denied for decades prior.
Back to normal means something different for me
Now that Melbourne is slowly opening up again, I'm celebrating with a knot in my stomach.
It's hard to validate myself when I feel stuck between able and disabled.
I'm rarely offered a seat on public transport despite wearing two badges advising of the need. I live daily with a level of pain others would rush to the hospital with. I shower and eat independently, but I often need my partner to finish cooking the dinner I started.
Invisible disability is a blessing and a curse. I most often have the option to hide or disclose my disability.
I now see things I didn't notice a decade ago: buildings inaccessible to wheelchair users, inadequate seating offered at small gigs, incorrect or absent subtitles, someone talking to a disabled 50-year-old like they're a toddler.
I'm grateful to fight for accessibility for all, when I can.
Disability has taken my jobs, friendships, hobbies, and my desired role in my family.
It has also given me a lot. I'm more compassionate of other people with restricted lives — the elderly, immunocompromised, new parents, recent immigrants.
I treasure the social event of simply bumping into a co-worker at the shops.
When I cook dinner a few nights in a row, I feel worthy of medals. On days when my pain is too disabling to move, you'll find me on the couch with a heated mat and painkillers, celebrating a new cereal like I've won the lottery.
Erika England is a 29-year-old woman living in Melbourne. She works as an administrative assistant in hospitality and manages daily life with chronic pain.
ABC is partnering with International Day of People with Disability to celebrate the 4.4 million Australians with disability.
Source: ABC