#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

TMI

(source)

TMI (Too Much Information) I see that written everywhere over support forums. Usually there's an apology stuck in there too.

Sorry, TMI post ahead. Please remove admin if not okay.

I've done it myself on more than one occasion. But each time a small part of me thinks, I wish I could just ask the damn question without feeling like I have to apologise.

You see, every time there is a TMI post it is always followed with comments like,

OMG, me too!

I thought I was the only one.

Thank you so much for posting.

Every time.

I've had the same reaction here on the blog, Whether I've posted about my bowels, or my hysterectomy, I am always flooded with thank you emails and messages. Though I wish people would post here on the blog, or over on FB, I understand their reluctance. So much of what is in truth, just a normal part of illness is wrapped up in layers of stigma.

You don't speak about those things.

Disorders like Dysautonomia come with a whole host of less savoury and often confronting symptoms. The Autonomic Nervous System runs throughout the body controlling multiple systems. And yet even most of our doctors speak only to a select number of symptoms, most commonly blood pressure and heart rate.

When was the last time your doctor asked you about your sex life? The literature is quick to point out impotence as a potential for men, but we women rarely get a mention. In truth, even for men apart from the impotence issue, little else is discussed in relation to sex. Yet whether physiologically, emotionally, or both, our sex lives can be impacted by Dysautonomia. A recent closed session from Dysautonomia International with noted neurologist and Dysautonomia specialist Dr Svetlana Blitshteyn (Sexual Health and Pregnancy in Autonomic Disorders), revealed a wide range of sexual, gynaecological and reproductive concerns. For many it was the first time these issues had been addressed let alone acknowledged. Dr Blitshteyn was able to provide answers to multiple physiological questions in these areas, clearing up myths, pointing out continuing holes in our knowledge and allaying fears for many. I have been ill for 8 years, yet this is the first time I've seen this subject addressed so directly. And the response from patients was overwhelmingly positive and grateful.

This of course doesn't include the emotional aspects of intimacy. When nausea and other symptoms get in the way of sex. Or the way we respond male or female, to body image, and the changes that can occur thanks to medication effects. For many of our doctors it would seem that as chronically ill or disabled patients we are supposedly asexual beings. Yet intimacy is an ongoing issue discussed in many forums by patients at a loss as to how to maintain it in a relationship.

Bladder and bowel issues are also highly common in the Dysautonomia community. Diarrhea, constipation, dumping syndrome, urinary frequency and urinary retention, and issues relating to continence abound. Yet again these are so rarely discussed by our doctors that patients feel there is something wrong with them when they occur. Without fail, every time I have brought up my own bowel issues here on the blog I am inundated with emails, the same for urinary issues. There are patients living with devastating continence issues who are embarrassed to discuss the issues with anyone, let alone a doctor. Yet there is help available and organisations such as The Continence Foundation of Australia who can help.

I had a little hissy fit over on FB recently about the LBL campaign from Poise, which exemplifies the problems we face.

Maybe I'm tired and grumpy today, but I get irritated with the Poise LBL ads. Are we so afraid to talk about bladders and incontinence, that we have to create an acronym to cover up what is being discussed? Women don't seek help because they are embarrassed, and yet there are organisations like Continence Foundation of Australia which can point women in the right direction to find help. There are specialised programs and specialised physiotherapists. Urinary incontinence is amazingly common, especially following childbirth, and can occur in certain patients with autonomic issues, and there are solutions, but people feel alone because it is not openly discussed. We don't need to shy away from the words 'bladder' or 'incontinence' as if there is something shameful about them. We need to be able to discuss these things, go to our doctors and find our individual solutions. Part of that is using real words and treating it as any other health issue. Take away the taboo and stigma through openness!

And given the numerous response's underneath I am not alone in a wish to destigmatise this issue.

For the most part Dysautonomia patients will be under the care of a neurologist or cardiologist. Embarrassment aside, it is not instinctive for patients to ask these specialisations about their continence or sexual issues. The emphasis is on heart rate and blood pressure, and many other symptoms simply remain undiscussed and in turn unknown. Many will need their doctor to raise the issue. Yet time and again this is not occurring. If our doctors are ignoring or uncomfortable asking about these aspects of our disorder, why would we patients feel comfortable discussing them? How do we even know to ask?

Not every patient will experience sexual or continence type symptoms as part of their presentation. But at least knowing it is a possibility opens up the door to discussions and takes away the fear and embarrassment associated with what are simply symptoms of the disorder, or potentially, another disorder. Symptoms just as normal as tachycardia or hypotension.

Being open about these issues allows doctors to treat the whole patient. It is not about expecting our cardiologist or neurologist to treat our continence issue. But to at least be able to discuss the issue and refer us to an appropriate specialist.

It is also up to us, as patients, to move beyond a TMI response to what are normal regular symptoms of Dysautonomia and other disorders. Too many suffer for our silence. Sex, periods, bladders and bowels AREN'T embarrassing unless we make them so. And openly discussing them is the only way we will change this perception.

So I say, lets remove the stigma and taboo and move forward in discussion and better all round treatment.

No.More.Taboo

Michelle :)

(I written extensively about the other taboo of mental health and chronic illness. You can find two of my main pieces here and here.)

I had to choose this Queens of the Stone Age song as my musical accompaniment. It's one of my favourites of theirs from the much under-rated Rated R album, plus the chorus kept popping in my head as I wrote.

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,600, keep donating and hopefully we can reach $10,000.

Fear and loathing in Las Loungeroom.

(Loving my new The Walking Dead mug. Suits my state of mind perfectly.)

I've had a bit on an unintentional blogging break of late. My mojo has been somewhat absent and my health not exactly stellar. Sometimes it's difficult to keep hold of that happy place no matter how much you want to or how hard you try. No amount of positive thinking works and you end up just beating yourself up for somehow doing happy wrong.

I've noticed there has been a move in some corners of the ether to stop discussing the negative emotional aspects of illness and in my state of funk, it's really rubbed me the wrong way. I've found myself moving further away from various groups which seem more intent on providing more in the way of inspiration-at-all-costs, rather than a safe place to vent and seek support or treatment information.

I'm all for inspiration, but not at the expense of silencing the patient voice. Illness sucks. At times it is hard to find anything positive to cling to. It is scary. It is challenging. It makes you want to cry uncle and hide sobbing in the corner. There is nothing wrong with these feelings. But there is something wrong with stifling those who voice those feelings or judging those who are in those dark places.

I understand not wanting to dwell in those places. That is not healthy. But ignoring them or pretending they don't exist is even more detrimental. Already we judge ourselves more harshly than anyone else possibly could. But to hear that we are somehow doing illness wrong is another level of guilt to bear.

Admitting these emotions is already fraught with stigma. Inspiration porn tells us that we should all be fighting the good fight. That we should face the world with a smile and a Can-Do attitude. That the sun will come out tomorrow. Turn that frown upside down. All you need is a positive attitude. We are beaten over the head with the permanently perky group-think that has been popularised by pop-psychology and smiling, big-haired, over-tanned pseudo-celebrities on the covers of shelf after shelf of self-help books.

Say it's tough and you might as well have said, "on my weekends I enjoy sacrificing small furry kittens to Beelzebub". That is where the problem lies. Not in the patients experiencing real emotions from living in a prolonged stressful situation. It takes courage to say it's not okay in the face of the overwhelming positive brigade.

Sometimes what you need is one safe place to say it's not okay. That you are scared. That it is all getting too hard. This is where a true support group can come to the fore. A healthy support group is a reflection of the different aspects of illness, part inspiration, part support, part venting, part information etc. We need a place to voice those thoughts and feelings free of judgement. To simply hear that someone else understands and has been there. We don't need solutions. We don't need to be told that we should stop being so negative. That we shouldn't share. That we should always try to find the positive. Some days you simply can't, AND THAT'S OKAY. We can support one another without forcing our own beliefs on others. Without expecting others to be in the exact same headspace as we are.

In psychology, there is a concept known as the Theory of Mind. In a nutshell, this theory suggests that we can attribute beliefs, emotions, states of mind etc to ourselves and others, and understand that other people may have beliefs, emotions and needs that are different to our own. It is this theory that allows us to have empathy for others. It means that even though others may be in a different emotional place to ourselves, we can still provide support and care for them. This theory or its lack can make or break a support group.

We can support one another with a long message or even a simple emoticon, a heart or a sending of hugs. Because sometimes that is all that is needed, especially when your heart and mind are already cluttered and overwhelmed. That lets another patient know they are not alone. It lets them know they can vent and then, that they can breathe.

Positivity has its place. I am a positive person by nature. But it cannot be sustained 24/7 and forcing that is an added burden patients don't need. We have a range of emotions for a reason and each has their place. We are all in different places in this illness journey and we can't expect that everyone will be as sanguine as we are in a particular moment.

This past week I felt fear. Something I haven't experienced in a long time. My bradycardia was the worst it's been in....well, to be honest, it was probably the worst it has ever been. I experienced all the scary thoughts. I realised there was a chance that my heart could stop. That my kids could come home to find me. I was scared to be alone. Later that night when my heart rate had stabilised somewhat I realised I was over it. Really over it. I've been sick a long time. I've had enough.

There is no shame in airing those thoughts. They were a natural response to a damn scary situation. They are thoughts that I know others have had. Airing them doesn't scare others. Or if it does it opens up an opportunity for more discussion and support. It allows others who have been sick for a longer time to share their experience. It means that should other patients have those thoughts at some point they know they are not alone. If they see support on a thread from other patients they learn ways to deal with the messy emotions that crop up with living with a complex chronic illness. They also see that we make it through. That no matter how tough it gets, there is a point where it gets better again. That today I am planning art projects and laughing at YouTube videos. The worry of last week is still there, but it is balanced against the good and put in it's place. Today I can laugh and smile again. I made it through. Today's emotion losses much of it's salience if it's not seen alongside the darkness of last week.

Living with illness is a frenetic ride, filled with complex emotions and situations. We face challenges to our sense of self, our relationships, our entire way of living. There are highs and lows and even the most positive people can find themselves dealing with sadness, fear, guilt and other negative emotions at times. Pretending those times don't exist or minimising another's experience does a disservice to ourselves and to our fellow patients.

Shame and fear thrive in silence. And that's one burden we can change.

Michelle

I should add I am a strong supporter of seeking professional help for dealing with this aspect of chronic illness. For some, psychologists or counsellors, for others clergy, or professional support lines. Support groups fill a very valuable place in dealing with illness, but sometimes more is needed. There is no shame in seeking help for the emotional aspects of dealing with illness, just as you would seek out a cardiologist to help with heart rate issues or a neurologist for small fibre neuropathy, a psychologist can help with the emotional roller-coaster that is chronic illness.

Love this cover of Tears for Fears, Mad World. Plus it was featured in Donnie Darko one of my all-time favourite movies.