(Yep blue hair, fabulous frock, bright red compression stockings and sparkly red heels for a pacemaker and cardiology check, I may be a fan of #Hospitalglam)
I've been
stewing over the reaction to #hospitalglam for about a week now.
Comments have ranged from supportive to outright rude. And it is the
later that have really gotten to me. Both the unwell and the well
have slammed the concept. And whilst I must say I am not surprised by
the comments of the healthy, I am disappointed by many of the
comments from fellow patients condemning her for making their lives
harder, or doubting the veracity of her health issues.
For the uninitiated
#hospitalglam is the creation of Karolyn Gehrig and can be found on
Tumblr, Instagram and
Twitter. Gehrig was diagnosed with a form of Ehlers Danlos Syndrome
(EDS) and like many of us with chronic illness, is a frequent flyer
in the medical system. She wears funky clothes (I have serious dress
envy over her pill dress) and poses for the camera in an array of
hospital and clinic settings. Many have followed her example, posting
various selfies of their own glammed up medical experiences, adding
them to the hashtag. The concept came to light recently in mainstream
media and the discussions around it have been interesting, and at
times infuriating, to follow (why I read comment sections I'll never know. It's a bit like picking a scab until it bleeds. Or watching
QandA.) The issues surrounding the accuracy of
the information relating to EDS is an issue for another post, but I
will say, journalists pick up your game. It's not that hard to find
accurate information about this collection of disorders.
When
you become a patient autonomy takes a hit. The very nature of
disease and injury mean you are reliant on another, a doctor, to
direct certain aspects of your life. You are reliant on the expert
knowledge of treating teams to direct aspects of treatment and
allow access to certain medications. Part of being on
top of your disorders necessitates regular reviews and things like blood tests. You must, to a certain extent, suck it up, (as
my your control freak nature screams in protest.)
You must accede control
to a medical system which trundles on oblivious to your personal needs
and desires. The hospital PA doesn't care that you want treatment
yesterday rather than waiting for six months. Hospitals feel more production line, than houses of healing as time poor staff are forced to minister to an ever growing multitude. You must tell your story a
bazillion times to every medical or allied health professional. You must play the game to a large extent, to have access to care.
The clinical nature of
medicine both in the hospital or regular clinic is frequently cold
and impersonal. You have to wear backless gowns and bear your body to
strangers. You have to lie there while you are pushed and pulled,
spoken about rather than too. As much as you pride yourself on being able
to self-advocate, and some like myself are lucky to have a husband who is a strong
advocate for my care, there are times where you are blocked. A doctor
can turn around and say no to a treatment and given the rarity of my presentation, I know I am limited to where else I can go. Choice is a lovely
word, but when it is spoken about in the context of health, it
negates the realities of issues like geography, finances, availability, and rare illness.
Control is an illusion
and when you are thrust into the medical system, particularly as a
chronic or long term patient you are slapped in the face with this
reality. It's easy to despair. It's easy to feel beaten down and
hopeless. It's easy to lose yourself to illness and the world that
surrounds it. How we find our way out is complex. The paths we take
and modes we employ differ greatly. And we arrive at that place at different times. But if we are to not simply exist
but thrive, we must find a way to reclaim control, and our sense of
self, however that may look.
#Hospitalglam is one method of
taking back control. And one I relate to strongly (Anyone who
followed my Clicking My Heels for Dysautonomia fundraising last year, or follow on FB, will understand why I am a fan of the #hospitalglam concept.) But it
is not the only one. Gehrig is not telling people what they should do. She is not telling people they must take her path.
She is sharing what works for her and the large following she has
garnered suggests that there are many people who can relate to her,
and her mode of rebellion/control.
I have seen headlines talking about #Hospitalglam, taking the “ugly” out of illness, or removing
the “shame.” Neither word deserve a place in the illness
narrative, and their use misses the point of the hashtag. There is
no shame in illness. It is simply something that occurs as part of
life. It doesn't matter how good a person you are or how well you eat
or exercise, illness can still come calling. No one wants illness, we
don't actively seek it. Nor do we do things to prolong it. “Shame”
is closely linked with blame, and if you have been ill for any length
of time there will be someone who tells you how you are to blame for
you continuing malady, be it your diet, lack of appropriate
religiosity, lack of kitten cuddling or refusal to see their favourite swami or eat 85kgs of [insert super food of choice] each day.
We are continuously fed
a lie both in the community and through the media that illness is shameful and ugly. Just to clarify NO ITS NOT.
“Shame” and “Ugly” are judgement statements. Why should we be
judged or internalise such a view, for something that is out of our
control? So not only do I have to deal with a debilitating illness but now I must also feel ugly and ashamed in the process? I say F**k that!. Yes there is pain. Yes there is vomiting. Yes we fall over.
Yes we require medical aides. We are cut and sampled. Swathed in
bandages and stitches. We may need feeding tubes or colostomy bags.
Gain excessive amounts of weight due to hormones or treatments, or
end up little more than bones in a skin bag due to malabsorption and paralysed stomachs. Our mobility,
speech, thinking etc may be impaired. We may be depressed, anxious,
dealing with bipolar disorder or schizophrenia. But none of that is shameful
or ugly. They are merely the cards we are dealt. To equate illness in
any context with shame or ugliness is insulting. And perpetuates damaging stigmas. Again, I say to the media, pick up your game.
In
#hospitalglam many see an alternative to the paralysing and
disempowering pity narratives of illness. They see an “up yours”
to illness and a system both medical and societal that says to be ill
you must conform to a certain paradigm. You are either pity worthy or
inspirational. But in neither case can you win. There will always be
someone to tell you, you are doing it wrong. The classic “you don't
look sick” in all it's forms is thrown at those who wish to frock
up or pop on some lippy (if only putting on my heels cured my broken genetics). Alternatively, if you stay in your pjs and
trackie dacks you are becoming your illness and need to pull yourself
up by your bootstraps.
Damned if you do and damned if you don't. And these are the themes peppering the comment sections of articles about the hashtag.
Gehrig is not telling anyone what they should or
shouldn't do. She is expressing herself in a way that works for her.
The media interpretation of #hospitalglam has missed so much of it's
intrinsic value. Her behaviour is not unique (though it can't be
framed as an inspiration narrative by the media unless it is seen as an
abnormality), many frock up in hospital and at medical appointments,
but hers has been a more public and organised expression. Given her background in
performance art it is not surprising that this is what works for her. But the way she and others
have chosen to express their experience is so anathema to the wider
societal views on illness that it has been held up as more of the
inspiration porn of which the media is so fond. Just like those
dealing with disability, the expectations of those with chronic
illness are so low, any achievement is seen as miraculous. We are
taught that such life events are the
end
of the world, so many are unable to conceive of a life filled
with joy or fabulous frocks
and illness. It is this framework which is so angering to many patients who feel like #hospitalglam represents yet another burden to add to their experience, rather than a moment of choice with a bit of tongue-in-cheek sparkle. Thanks media.
Patients are
people first. And people are inherently diverse. The way we react to
illness varies greatly, but that doesn't mean we can't appreciate or support the way others choose to seize the day. Even if we don't understand or like their particular choice. While #hospitalglam celebrates fashion for
it's power to give illness and the medical system the finger, others
use art or music. Some form book groups or join support
organisations. Some garden. Some engage in cosplay. Some are Trekkies
and yet others,
shudder, Beliebers. The idea that illness is
some sort of end of the world scenario is far from the truth for many.
When you are living with an illness or disorder that may never go
away you find ways to deal with it, and that will look differently
for different people.
Whether other's do or
don't like #hospitalglam is beside the point. This is her experience
and her expressive outlet. She is entitled to do whatever works for
her. Just as every patient is entitled to do what works for them. As someone who wore sky high red sparkly heels to their MRI and
bright red compression stockings during their pacemaker implantation, I celebrate her chutzpah and raise my bright red lippy in salute.
Michelle
