Some days, getting dressed is a major achievement for Michelle
Roger. The sheer effort of getting out of her pyjamas is enough to
send her horizontal for the rest of the day. That’s just one of the
reasons she’s so determined to do it – and to record it for posterity.
“Every time I put a shot on social media of me in an outfit, it’s like
I’m giving a middle finger to a society that says I don’t exist,” she
explains. “It might look like a selfie, but in reality it’s a political
statement. Being positive about myself; enjoying fashion; wearing a
short skirt – those sorts of things make people quite uncomfortable.
But I’m unapologetic about who I am and what I want.”
Michelle has dysautonomia, a chronic illness that is slowly
robbing her of her mobility and cognitive powers. Technically,
‘dysautonomia’ is a blanket term for a motley crew of disorders that
affect the autonomic nervous system, but in basic terms, it throws
your body’s autopilot out of whack. Most often, it causes a person’s
heartbeat, blood pressure, temperature and digestive system to
malfunction with unpleasant and unpredictable results.
“If you’ve ever fainted, you’ll know there’s a period right before
when your vision starts to go; your blood pressure drops; you feel
nauseous and clammy; and you might shake and have goosebumps.
That’s my basic day-to-day,” Michelle says. “As well as that, I really
struggle with brain fog and have problems with attention and
concentration. My memory is shocking and finding words can be
hard. If I’m quite unwell, even talking is really difficult.”Her illness might be doing its best to drive a wrecking ball through
her mind and body, but Michelle is not taking things lying down- unless she really has to. Her blog, “Living with Bob” (Michelle’s
nickname for her condition, because “have you ever tried to say
or spell dysautonomia?”), tells the raw, unfiltered story of how
the illness has turned her life upside down and inside out. The
former neuropsychologist writes frank, frequently hilarious and
searingly honest posts that reveal the reality of living with an
oft-misunderstood chronic illness – and documents some of her
favourite get-ups, as well.
“From the moment I wake up till the moment I go to sleep, I’m
taking my illness into account, but I’m still living, still having
fun,” she says. “I wish someone had sat me down when I first got
sick and said, ‘Look, Michelle, it’s going to be OK. There won’t be
rainbow-farting unicorns, but it’s still going to be all right.’”
Michelle’s version of ‘Bob’ requires her to wear a pacemaker to
regulate her heartbeat, and take a variety of drugs to keep her body
functioning. She can no longer drive or work, and is increasingly
reliant on her wheelchair, ‘Lucille’, to help her get around. She has
to eat a high salt diet (“My cardiologist says, ‘If you can taste the
food it’s not salty enough’”) and drink copious amounts of fluids to
help boost her blood pressure.
While her husband David and their two sons “completely get it”,
others still struggle to understand her condition. “Now I’m in a
wheelchair a lot of the time, people outside my immediate family
say things like, ‘Aren’t you embarrassed to go out in public?’ They
assume you must be miserable all the time. You’re damned if you
do and damned if you don’t. If you focus on your illness, you’re
judged for only thinking about yourself. If you focus on living,
you’re perceived to not be that sick.”
Realising she could change the way she felt about her situation – and
how others saw her – was a major turning point. “I’ve always loved
fashion, but when I got sick it became really difficult. I had periods
when I’d get inspired and get dressed up, but two or three years ago,
my health was really bad and I was in pyjamas all the time, or a pair
of old trackie-daks. I was so unwell I couldn’t shower or wash my hair.“One day I thought, ‘I can’t keep living like this. I need to do
something.’ So I got up, got dressed, took a photo and put it online.
It was very self-nurturing. I made it to 10 days of documenting my
outfits, then 11, then 12... I wouldn’t necessarily shower, but I’d get
dressed, run a hand through my hair and feel like a person. Each of
the photos kept me accountable for that.”What began as a little exercise to cheer herself up soon turned into
something bigger. Other people started seeing her posts – grouped
together on her blog under the heading “Up and Dressed” – and
commenting, telling Michelle how she had inspired them to make a
similar effort. “It became something for other people as well as me,
and that was quite heartening. I got messages from folks saying,
‘Because of you, I’m going to try to put some lipstick on,’ or ‘Today I’m
going to brush my hair and put on a nice jumper.’ They realised you
can be sick, but you can still take care of yourself in some small way.”Dressing up – or even just getting dressed – has since become a way
for Michelle to re-engage with the world and reclaim some space
as a disabled woman. She makes a point of seeking out brightly
coloured or patterned versions of the compression stockings that
are so vital to keeping her circulation going, teaming them with
funky op shop finds or vintage treasures. (Tips for finding the most
fun, affordable and comfy compression stockings can be found on
her blog.) Michelle’s walking stick is a work of art, too, rather than
standard-issue hospital grey.“I realised you can make the things you have to do or use every
day a little bit special, without having to put in any extra effort.
If you’re feeling really sick, you can put on a nice pair of PJs instead
of your daggy old ones. Now, when I’m too sick to get up, I wear
a beautiful 1930s bed jacket that I got from the UK, and the water
bottle beside my bed is a cut-glass one. Even though my world is
tiny, I try to make the most of it.”Michelle says her Up and Dressed posts are part of an explosion of
online content created by disabled or chronically ill people, showing
the rich realities of their lives. “Every time I post an outfit, I’m
acutely aware it’s not just my love of fashion that’s on display. It’s a
general trend in society that you don’t see people with disabilities
unless it’s a pity show, or someone has overcome their illness to
climb Everest. You don’t see people just living their lives, and fashion
is part of that. Taking a photo of myself in front of my shed is a way
to show people that, hey, I got up and made an effort (even if I had to
lie down afterwards).“Yes, bits of me aren’t working; yes, I will be taking meds for the rest
of my life; but I’m not ashamed. I don’t think I should be and I want to
show people that you can embrace who you are. It’s a real move away
from the medical model of disability and illness. It’s not something a
lot of doctors get, but we’re trying to take control of our lives. For me,
that’s as simple as taking a photo of myself wearing bright compression
stockings with an op shop dress and putting it out there.”up and dressed
MICHELLE ROGER HAS A LOT
TO SAY ABOUT FASHION, DISABILITY
AND ACCEPTANCE.
Wor d s Lucy Corryexperience