#Hospitaglam: Giving illness a very fabulous middle finger.

(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

Media misrepresentations of Dysautonomia Part II: ABC World News

Yet again Dysautonomia, in particular POTS (Postural Orthostatic Tachycardia Syndrome) has made the news following a story on ABC World News (US), and once more patients are left dealing with the aftermath of inaccurate information.

For those who did not see the story, POTS was described as being directly related to small heart size resulting from de-conditioning, with exercise being touted as the 'cure'. Admittedly, the hosts did provide a short caveat following the story to say this may not be the case for all patients. However, the story itself was clear in its message and was given additional legitimacy by the use of repeated reference to NASA research. And again patients are left frustrated.

Despite overwhelming evidence that aetiology for POTS and other forms of Dysautonomia are many and varied, including but not limited to, autoimmune conditions, neuropathologies, connective tissue and mitochondrial disorders, POTS was presented as a uni-dimensional construct. Similarly, despite many patients extremely physically active prior to the development of POTS (including Olympic athletes and marathon runners) POTS was inaccurately portrayed as a condition created through de-conditioning and repaired or cured through reconditioning via a recumbent exercise regime. With the conclusion that resultant small heart size is the central problem. This again despite many patients continuing to demonstrate hearts with normal dimensions for age and sex, as confirmed by repeated heart ultrasounds even years after symptom development.

The by line underneath the video " NASA research helps treat women with fainting disorders" is also inaccurate as men are also affected by POTS, although the ratio of women to men (5:1) swings heavily towards women. Not to mention that not all POTS patients experience syncope. 

Whilst, there are undoubtedly POTS patients who meet all of the criteria mentioned in the story, and are essentially 'cured' by such an exercise regime, they are but one small group amongst a diverse range of patients. To present one small segment of a patient population as representative of a whole disorder is not only inaccurate, it is highly damaging to those who do not meet this limited criteria

What is troubling about both this recent event and The New York Times article of last year (see my response last year on ABC Australia's RampUp), are that the purveyors of information are seen as well respected media outlets, thus lending legitimacy to information they provide. Whilst I as a patient have a vested interest in accurate information about my diagnosis, the average reader or viewer will take as gospel the snippet of information provided by these forms of media.

A quick scan of patient forums reveals that patients are already being left 'helpful' messages from friends and family that all they need to do is exercise and they will get better. Some are even having the legitimacy of their illness and continuing ill health challenged. A disastrous outcome by anyone's reckoning.

It has also come to light that the patient involved in the story has been poorly treated and misrepresented by the network. Her sister who accompanied her during the filming left the following comment on the ABC World News website:

"...were at the Cleveland clinic for a week of additional cardiac and neurological tests when she was asked to share her story about POTS. This has been a very debilitating condition for her and many other people; and so she agreed to share her story and even repeat tests that were difficult and painful for her – for the camera – so people could learn and understand more about this very life alternating diagnosis. In fact this taping took about 6 hours to film and required her to be stuck 3 additional times for an IV. I accompanied her, often pushing her in a wheelchair, and watched all of the videoing for this story. So what happened? ABC used a few seconds of her story, took it highly out of context, and made her out to be really without disability and even pronounced her “cured” – even when they knew that she hadn’t even received her test results back to determine the cause of her POTS (and there are MANY). Further – she has submitted several responses to this blog that have not been published (even though posts before and after her submission were posted). She has friends and family now thinking her “prescription is simple” and all she has to do is exercise – oh and of course since ABC has declared her “cured” that she can now go back to her everyday life. People are even posting on this site that she doesn’t even have moderate POTS because ABC has made her disabling condition of extremely high heart rate (160) and extremely low blood pressure, extreme fatigue, blurred vision, etc out to be that she is just a “chronic fainter” who is now cured. Very disappointing and an outright total mischaracterization of the facts. I decided to try to post to see if in fact ABC will post my comments since they apparently will not even let her defend herself from these lies on a blog".

Such treatment by a patient who had the courage to share her story is frankly, appalling.

Whilst the increasing awareness of POTS and Dysautonomia in the media is a step forward, misinformation and oversimplification of a complex and poorly understood syndrome is not helpful. As patients we shouldn't be expected to simply 'be happy' with any publicity.  We have a right to demand an accurate and non-damaging portrayal of our experiences.

Whether it be The New York Times or ABC World News, medical professionals need to understand the power they wield when portrayed as experts in their field, or when linked to prestigious scientific organisations such as NASA. It behoves them to choose their words wisely. With these media outlets, and prominent and respected journalists such as Diane Sawyer, involved in the presentation of this information, legitimacy is instantly imbued. These groups need to remember that whilst legally they may not have a duty of care to ensure that the information they provide on either Dysautonomia or any medical condition is accurate and does not harm those it is intended to help, they have a moral and ethical responsibility not only to the patients represented but the wider community to not provide misleading and damaging information.

One positive to come out of this most recent issue is the unification and mobilisation of the wider Dysautonomia community. Thankfully the use of the unprofessional and demeaning term Grinch Syndrome was avoided in the ABC report thanks to the concerted efforts of the Dysautonomia community, led by Claire Froust Martin of Stop POTS Virginia and Lauren Styles of POTSgrrl.  See Irish Dysautonomia Awareness for a full round up of the issues of the last few days.

As many of the issues have not changed since I last wrote on this issue last year, here's the link to the article I had published Sticks and Stones: When the media perpetuate the myth, which covers a lot of the same topics.

To reiterate, POTS and Dysautonomia as a whole, is a complex and poorly understood disorder. Repeated and ongoing research has demonstrated that there are multiple aetiologies and mechanisms involved, all of which affect outcomes. Treatment needs to be tailored to the individual and are most often a combination of pharmaceuticals, lifestyle and dietary changes and graduated exercise programs. Some patients will essentially recover with time, some will continue to present with a relapsing-remitting profile, some with a chronic condition and some with a progressive path. It is not simply related to the heart. Thanks to the involvement of the Autonomic Nervous System, patients experience symptoms as varied as poor thermoregulatory control, delayed gastric emptying and even how their pupils react to light. The severity of the symptom presentation and the impact it has on the lives of sufferers and their families is varied. Many patients also present with a myriad of comorbid conditions which make treatment complex and difficult.

This is what the ABC World News story failed to convey and this is why patients will continue to make their voices heard.

Michelle

PS. Yes yes I am having a blogging break, really I am. My youngest goes in for surgery on Monday so I'll start putting up the guest posts next week. :)