Thursday, 30 March 2017

Metamorphosis: Marketing Medical Compression as Fashionable and Transforming the Narrative around Disability and Illness.

[Image: Nine photos 3x3 showing me wearing a variety of colourful compression stockings in a variety locations. The photos are all from the last year and reflect my changing hair colour from green to purple to pink. I am seated, in my wheelchair and standing with my walking stick.]

Note: The Juzo, Mediven, and Sue websites I've linked are not in English. Each page should give you a translation option, otherwise there is a translation icon that should pop up in the right side of the URL bar.


Recently, the promotional video for the new season trend colours, was released by the German arm of compressionwear company, Juzo.

I sat watching with a huge grin on my face. Not only were the colours fabulous (Happy Red is a personal favourite), but the promotional video and the behind the scenes short film both framed medical grade compression in an energised, stylish, more inclusive and fashionable manner, not unlike what you would see for any fashion brand. A rarity in a market that sees clinical practicality as it's primary driving force.

This is not the first time I have been struck by Juzo's attempt to merge fashion into the medical grade compression world. In 2015 they released a similar video for their Urban Jungle range (below is the behind the scenes video for the range).

(The 2015 campaign sent me in search of their products. And the bright Kings Cross Yellow in particular became a favourite that I frequently wear.)

Both videos have moved medical grade compression stockings from the clinical, sterile, medical domain to a fun, stylish and normalised aspect of life. There is also a move away from a product primarily aimed at an elderly market (mind you 43 or 73 I want a bit of wow in my compression stockings) or a practical work component (eg nurses often wear compression stockings as they are on their feet all day).

Juzo are not the only company to actively seek to reposition their compression stockings away from a purely medical product to a fashionable product. Mediven showcased their Elegance range at Berlin Fashion Week 2016 (read more here). I love their write up and the photos showing how integrating medical grade compression and stylish fashion can be effortless and looks fantastic.

Both the Juzo and Mediven campaigns are exciting. They mark a distinct move in the market: where fashion has become an important part of design. This is a move that those of us who purchase these products have been seeking for a long time. It also represents a realisation that real people are wearing their products and that fashion matters to those wearers. This is a distinct move from a traditional medical products market that has historically designed for, and targeted, large organisations who's purchasing guidelines are based on practicality and fiscal responsibility.

The disability and illness communities have their own purchasing powers and no longer rely exclusively on organisations to provide them with products such as these. The proliferation of online shopping means that we are no longer beholden to the dictates of the medical system where we are told what is on offer and what we will receive. In a sense the middle man is removed from the equation and some companies are recognising that they need to market to the individual user. Though cost continues to be a limiting factor for many on low incomes and for those of us living in the Southern Hemisphere where postage and a poor $AU can create an added level of financial burden. Options to decrease costs and source sales are available but it can be time consuming.

They also change the narrative around a product that is often associated with a negative representation of increasing age or illness. A necessary evil that many must purchase, but hate due to the illness they represent, and a previous lack of attention to their aesthetic value that firmly places them into a hospital or medical model.

In reality, compression stockings increase functionality. As a long term user for me they represent an increase in endurance and a reduction in pain and swelling. They help to reduce my symptoms and in so allow me to do more. They add to my overall level of functioning and in turn aid me in getting the most out of life. And with these new ranges they can also be integrated into my personal style. A win on many levels.

Out the front of our local where we tend to always go for date night. You can see the stockings better in this one. They are @sigvaris (although @Jobst) do a similar pair). It can be hard to style #compressionstockings in Summer or it you're going out but it is possible. I wear them with shorts and dresses all the time. I don't pretend to have any fashion styling prowess, I simply wear what works for me, but if you are confident and forget they are a medical product it is possible. Especially with all the fashion options avaliable these days (check out my blog for links and reviews). * * I also take inspiration from fashion bloggers I love like @ladymelbourne who made me really think about personal style and confidence to take a chance and embrace what I really love. Or wheelchair and diasbled fashionistas like @itslololove and @cur8able (the idea of lengthening limbs when sitting by simple tricks like pushing up sleeves on a jacket are gold). And I broke out my high heels again in part thanks to @angelarockwood_official. There are so many amazing disabled and chronically ill fashionistas to take inspiration from. And it is possible to tweak current looks to be disabled friendly with a little thinking outside the box. * * I really wish we could see a more visible disabled presence on runways here in Australia. I wish we could see disabled fashion presented like you would any other (@IZadaptive did a great campaign this year but are sadly closing). The importance of that visible presence can't be underestimated for disabled and able-bodied alike. * * Fashion is for everyone and should be accessible for everyone. Across a whole host of styles for people who like fashion as a medium of self expression (gosh I love @viktoriamodesta avant-garde looks) or simply want to frock up on occasion. We aren't a niche. We are consumers with cash who want to wear fashionable clothes. #dysautonomia #chronicillness #disability #fashion #frockingup #fashionblogger #ootd #wiwt #everydaystyle #40plusstyle #wheelchair #wheelchairstyle #wheelchairfashion #disabledfashion #disabledstyle #streetstyle #ruraldisability #ruralstyle #ruralfashion #Australia #gippsland #upanddressed
A post shared by Michelle Roger (@michelle_roger) on

Fashion can increase usage rates.

Like many Dysautonomia patients I wear medical grade compression stockings every day. Prior to any pharmacological intervention they form an important component of first line treatment, alongside increased salt intake, increased fluids and a graded exercise program. We know that peripheral vascular flow is frequently impaired, as seen with visible blood pooling and swelling in lower limbs, and that this is part of a systemic process that contributes to many of the symptoms patients experience.*  However, the implementation and continuation of this management technique is often low.

Compression stockings are notoriously difficult to don and remove even with the various techniques and devices offered. They are also hot, a significant problem when you have a disorder in which thermoregulatory control is often impaired.

But by far the biggest complaint regarding medical grade compression stockings is related to how they look. 

Despite doctors frequently prescribing compression stockings to treat issues such as poor venous return or oedema there continues to be a lack of knowledge about fashionable options. Patients may be given a pair of  white TED stockings during a hospital stay, or head to their local chemist and find information about black, white, beige and perhaps navy. But any discussion of fashion tends to be confined to lamenting it's lack in the compressionwear market.

I have been writing about my search for fashionable compression stockings since 2012. At that time I was stuck in the compression purgatory that many patients face. I was given a scribbled prescription from my cardiologist with little to no information. I was to seek out a pair of 20-30mmHg waist high compression stockings. There was no information on brands or where I could source them beyond a vague "ask at the chemist." At my chemist I was met with confusion. Why would a then 33-year-old woman be asking about compression stockings? Were they for my grandmother?  I was shown a catalogue of limited styles and ended up with two pairs of very uncomfortable waist high, very practical, black compression stockings. It was a step up from the beige I had been offered originally but depressing all the same. Then in 2012 I found my first pair of coloured compression stockings and a new world opened up.

Since that time I have shared every fashionable option I have found with readers here on the blog, in support groups and on Instagram. It is like a new world opened up. Whilst always a practical medical item at their core, it became apparent that they could be matched to personal style. No longer were they something to be worn with spite and loathing. Instead there was a transformation and a normalisation of a medical product. A way to take back some control of my life from the relentless medical need. And I like many others wore their stockings with increased regularity and in turn increased functioning. (I feel a little like I should we lived happily ever after at this point!)

Where is the Disability Representation?

The Juzo video features a range of models, including a variety of body types, ages and sexes (although, unlike their 2015 campaign, only white models are used in 2017). I applaud their move towards diversity, something rarely found in the compression stocking advertising, however disability again is missing from the mix. This seems a surprising omission in what is at it's core a medical product. A quick scan of social media platforms such as Instagram, reveal a large population of disabled fashion lovers. The incredible work of Alleles prosthetic covers, the beautiful bespoke pieces created by The Alternative Limb Project, the increase in accessible fashion brands such as Bezgraniz Couture or Sue flourish thanks to a huge fashion loving disabled market seeking more fashionable options.

Disability representation for a product like medical compression should be part of any advertising campaign. And while the overall feel of this new wave of campaigns is very positive the neglect of a key group in the market is disappointing. I am cognisant that some of the models in these campaigns may have an invisible disability, I know prior to my need for mobility aides I looked very healthy despite my underlying medical issues, but the importance of visibly disabled models in campaigns such as these cannot be underestimated. Visibility changes how society feels about disability. Visibility changes how we feel about ourselves. I both love these campaigns and fully embrace the change in narrative surrounding a product with what could only be described as a PR problem, but I am disappointed that a disabled model is not part of the mix.

Advertising is often framed in terms of aspiration, in the case of the Juzo and Mediven videos a fun, stylish and energised life. Surely we as one of the largest user groups of these products, we should be included in this aspirational narrative. I know that many disabled fashionistas are living fun, stylish and energised lives, our inclusion seems obvious. While at a grass roots level we are gaining momentum in changing how we are viewed by choosing how we are representing ourselves, it would be nice for brands to come on board and follow our lead.

Where to from here?

Companies such as Juzo and Mediven are slowly changing the narrative around compression stockings. However, awareness and availability of fashionable compression stockings desperately needs to increase.

Even with fashionable products available in the market, their lack of visibility and availability, means that the more traditional and basic options continue to dominate and tend to be the only styles offered to new patients. We are stuck in a self-fulfilling prophecy where by patients don't request fashionable items because they don't know they exist and the gate keepers of these products don't stock them. And the gate keepers say that they don't stock them because no one is requesting them.

Whilst, medical professionals continue to prescribe compression stockings for a range of issues they are rarely aware of fashionable options and they have no idea that they can be integrated into our personal styles.

It is clear that a wider advertising campaign needs to occur. At present, information about fashionable options are shared patient to patient, on blogs such as this or other forms of social media such as Instagram, or on forums. This informal advertising whilst fabulous, is still haphazard and reliant on luck and at least one patient who spends her nights working her way through Google looking for new fashionable options and tries her hand at styling them. I'd love to see compression brands on more runways and in mainstream fashion advertising. Or taking tips from sporting compression companies such as Skins or 2XU who have moved from elite sporting environment to become household names and found in gyms and sporting fields all around the world.

And I would love to see disabled models featured in their campaigns. 

Like many in my position I spend enough time in the medical system and I have no desire to wear a piece of cold, clinical hospital every day.

What I do want is something that meets my practical needs but can also be incorporated into my personal style. I am happy to flaunt my bright yellow, or red, or green, or blue, or patterned legs all year round. To wear them with shorts or dresses. To get on with this business of living knowing that I can be both practical and fabulous.

Reframing a traditional medical product in the new wave of campaigns helps to change how we think about those that wear them. It helps to change how we feel about ourselves. So much of my life and the lives of those around me are dominated by medical needs. Reframing how we think about and relate to items like compression stockings helps to remove stigma and improves how users feel about themselves. Incorporating fashion into practical medical products is a simple way to change these attitudes. And a definite selling point.

Fashion, medical practicality and disability can coexist. Time for more companies to come on board.


*There is also evidence of abdominal blood pooling, in particular in Neurocardiogenic Syncope (NCS), and abdominal binders/compression are now often recommended alongside waist high compression stockings.

Some more resources here on the blog:

Compression Stockings: From Beige to Brilliant 

Fashionable Compression Stockings 2016 Update: Options and Tips.

Rejuvahealth Review.

Allegro, Microfibre 20-30mmHg Black Thigh High Compression Stocking Review

LympheDiva Gauntlet Review.

Fashion blogging is not for the faint of heart

Goldfrapp's Happiness seems an appropriate musical accompaniment as fashionable compression stockings makes me very happy.

Wednesday, 15 March 2017

Yes, Disabled People Wear Lingerie.

[Image: black and white photo of a walkingstick in a window with a bra handing from the handle. And because it didn't occur to me to dust, there is a scattering of dead black insects and some cobwebs on the white windowsill.]

Last year I rolled into a lingerie store to check out a rather fabulous emerald green bra and undie set that had caught my eye in their display window. I rolled around the tightly packed store grazing racks of g-strings and t-shirt bras until the inevitable happened. On the back of Lucille (my electric wheelchair) are a set of handles that allow another person to push the chair if I run out of batteries or become too incapacitated to manage my joystick. I forget they exist 99% of the time. They are behind me and I am highly unobservant even on my good days. The 1% of times are times like that day when, dazzled by the wall of lace and satin, I had deviated 1° off my safe path and caught a rack of lace teddies on a handle. I promptly pulled the entire rack of teddies to the floor. I stopped mortified as the loud clatter of plastic hangers dwindled into silence. Looked back to find a pile of plastic and lace on the floor and a single sad white teddy hanging haphazardly off one of my handles. I waited for assistance.

And waited.
And waited.

The attendant didn't even look at me and I was faced with a set of tight, black clad shoulders that either belonged to the ghost of a past store attendant, or, she clearly had no intention of turning around. Embarrassed and leaning precariously from my chair, I tried to pick up the pile. When it became clear my attempts were going to end in a possible worsening situation, that of an uncoordinated disabled woman plummeting from her chair to take out an even larger display of lace and satin, I leaned back. I twisted. Grabbed the lone teddy from my handle. Hung it back up on the chrome display pole. And rolled out. When I looked back the attendant was clearly relieved I was gone.

At no point from when I rolled in to when I left did she make eye-contact. She saw me enter, turned her back and continued to speak to the only other woman in the store. I felt like I was back in high school when the cool girls would deliberately ignore my decidedly uncool self. The classic exclusionary tactic employed by teenage girls throughout history: turn your back and continue to talk like the uncool girl never entered the room and doesn't even exist.

It was clear that I was not welcome. 
A disabled woman in a lingerie store? 
No thanks.
Too difficult.
Too ick.
Too "why would a disabled woman even want lingerie?"

I know I'm not alone in this experience and have had multiple conversations with  disabled friends who have felt excluded or discriminated in lingerie stores. People have difficulty with the concept of disability, and in turn interacting with disabled people. But the combination of disability and sexuality makes people profoundly uncomfortable. However that sexuality is expressed, from purchasing lingerie to dating, exploring sexual identities, or participation in different lifestyles, it quickly becomes clear that society doesn't want that connection to exist. (There was a massive blow up on a popular disability site a few years ago when a sex positive story about a disabled adult attending a completely legal sex party in Canada was published. The gentleman in question found it a celebratory, inclusive and empowering event. Responses were clearly split between those who did and didn't have lived experience of disability. Disabled commenters were predominantly happy for him. However, many parents of disabled children, carers, and adults without lived experience of disability were horrified even threatening to report the event and the group to authorities. Similar responses also occur when there is mention of the use of sex workers to aid disabled people in exploring their sexuality.)

Disabled people are seen as asexual by many. Or undesirable. Or as frequently comes up in comment boards when disability and sexuality are discussed, special snowflakes, or forever children who should not be sullied by icky notions like sexuality. Many simply go straight for the "how could a disabled person possibly consent to sex or any expression of sexuality?" That there are different types of disability, that we could consent, or be taught about bodily autonomy, choice or safe sex practices doesn't even enter the public conscience. That sex is a part of the human condition and should be considered a human right for non-disabled and disabled people alike is rarely discussed. We are not supposed to be confident or feel attractive. We are not supposed to own our own experience. We are to inhabit the realms of pity or inspiration and never dare to mention that our wants and needs are strikingly similar to those who are not disabled. And the idea that we might simply want to wear some hot lingerie that makes us feel confident, for ourselves, not anyone else, isn't even in consideration. The woman in the lingerie store let me know that I wasn't welcome. And she definitely didn't see me as a potential customer.

Pfft to you rude woman! I'll spend my dollars elsewhere.

Yesterday, NZ company Lonely Lingerie's new campaign came to light. It stars 57-year-old Mercy Brewer. The photographs show a confident older woman wearing some fabulous sexy lingerie. Stylistically the photographs and the lingerie are no different to what you'd see in a campaign with a younger model. This is not the conservative, stodgy, lingerie we are routinely shown in advertising directed at older women. It is unashamedly sexy. And it is fabulous. It defies so much of the narrative around older women. Women in Mercy's demographic tend to be framed as mothers or grandmothers, and advertising and society tells us there is only one acceptable form of mother/grandmother. I can't help think of Madonna wearing a revealing outfit at the Met Gala last year which was met with cries reminiscent of Maude Flanders "won't somebody please think of the children!" As if motherhood or grandmotherhood, or age, (or disability) automatically wipe away a woman's sexuality and self-expression. As a purple-haired, side-shaved, mini-wearing, 43-year-old, disabled woman and mum of two son's, I call BS on that.

[Image: An older woman leans against a wallpapered wall wearing a black bra. The entire photo is in sepia tones. Text below says "Aging can bring a quiet confidence unknown in youth, what use is beauty without confidence to recognize yourself?" -Mercy Brewer #LonelyLingerie]

I read a piece discussing the Lonely Lingerie campaign that stated that age was the final frontier of lingerie advertising. I would have to disagree and say that disability continues to be the final frontier as we so hard pressed to find any disabled women, or men, in lingerie campaigns. And an older disabled woman? I swear I belong to a group of mythical women dwelling in a land that time and advertisers forgot. I met a woman just like me at a concert recently. She had no idea that other older, less conventional, disabled women in wheelchairs existed. We bonded on shared experience and anger that we are never represented in advertising, or media, or life.

While the lack of disabled women in advertising is clear, it is equally apparent that even the concept of such a thing as diverse women's bodies remains controversial (that mythical land of diverse women is pretty bloody full! And only a few hardy adventurers/advertises seem willing to go searching for those far lands.). There is a particular part of society that is vehemently opposed to diverse women who are comfortable and confident living in a body that much of society and the majority of advertising would prefer be hidden away. Add in any hint of sexuality for those who have a different body type from the dominant advertising norm, and people become even more uncomfortable and frequently vicious.

Today I watched as US company Livi Rae Lingerie's was told that their images of diverse body types, including a disabled woman in a wheelchair were in "poor taste" and should be removed. The images show confident women speaking for and about themselves. These women, like the Lonely Lingerie campaign, defy the standard lingerie images we see that use young, thin, white women/teenagers. When this was revealed, an online campaign developed #NoShameLiviRae, and following the overwhelming publicity and backlash, the decision was reversed. How they were in anyway offensive boggles the mind. Stylistically these photos are definitely more on the conservative side of the ledger, especially when compared to the Lonely Lingerie campaign. And still someone got their knickers in a knot (all puns intended).

Won't somebody think of the children!

[Image: A smiling woman sits in her wheelchair wearing a beige strapless bra and white half petticoat. Caption says: Real Women. "I want to be an example MS or not. People can do what they set their mind to. I always felt the desire to encourage anyone, at any age to never give up and to believe that they are amazing and perfect just the way they are. Even a girl in a wheelchair can be influential" -Stacey Shartley LiviRae Lingerie Ambassador. Livi Rae Lingerie #RealBrasRealWomenRealStories #LiviRaeLingerie]
(Source: Livi Rae Lingerie Facebook Page)

These two campaigns are very different. But in both cases the women are confident. They are from groups who are not regularly seen in lingerie campaigns. They are expressing themselves. And owning their lives and their experience. For themselves and not for anyone else. And that makes many people uncomfortable.

Personally, I love the Lonely Lingerie campaign, and think the company could do great things for disabled representation in the lingerie market.

I want to see a disabled women shown as a confident sexual being.
I want to see what lingerie may look on a body similar to mine.
I want to see her unapologetically owning space and her image.
I want to see her giving a big F U to the naysayers. 

As an older disabled woman, simply seeing an older woman portrayed in this manner made my heart sing. If I were to see an older disabled woman portrayed in this manner I may break out in song and my best jazz hands and spirit fingers.

Diversity in advertising makes financial sense. If companies can't make the move because it is the right thing to do. Then surely attracting a wider market that will increase your profits is attractive.

Diversity in advertising is a powerful tool in changing the way we think about difference in our society.

Diversity in advertising is also powerful for those who are part of those diverse communities. It says I'm here. I'm not alone. I'm part of the community. And I have value just as I am.

I'll never go back to the lingerie store where I was ignored. But I do want to buy lingerie that makes me feel confident.

And I want to buy my lingerie from a company that sees me.


Sing it JT!

Friday, 24 February 2017

Mirror Mirror On the Wall: 'Own Your Beauty' initiative from BlogHer (Updated 2010-2017)

I've written the following post in response to the BlogHer initiative Own Your Beauty (2010). 

"Own Your Beauty is a groundbreaking, year-long movement bringing women together to change the conversation about what beauty means. Our mission: to encourage and remind grown women that it is never too late to learn to love one's self and influence the lives of those around us - our mothers, friends, children, neighbors. We can shift our minds and hearts and change the path we follow in the pursuit of authentic beauty"

I am the product of a long line of body loathers. I grew up in a family where my body type was the subject of derision, and nicknamed "The Hellsten Curse".  My indoctrination began as a small child when I listened to my mother lament the long list of physical faults she saw in herself.  After which she would always apologise with the same words, "Sorry love, but you look like me".  A simple sentence that over time shaped the way I viewed myself.

Such thinking was not isolated to my mother. All my female relatives ascribed to this way of thinking. It was, and is, a bond that holds us tightly.  A review of photos of female kin past and present, has always been a time to mourn our genetic lot in life and highlight any unappealing physical traits we were bound to re-produce. Family gatherings a chance to join together and rue our physical imperfections. Never did I hear a single bodily affirmation. Compliments were dispensed of with precision shots, that clearly re-established the negative norm to it's rightful place.  Always there is a competition to see who can denigrate one's self the most.  We are truly independent women.  We put ourselves down, we don't require anyone else to chime in.
Over my 37 years I have learnt the lessons of my female kin well. I look in the mirror and see only faults. I look in the mirror and see all the ways I will never be perfect. Not that I necessarily know what perfection looks like, I simple know it is something I will never achieve. I know I will never be good enough and in that moment I realise I am truly one of the clan. There is something comforting in that moment, and something equally disturbing. It is only in more recent years I have come to identify and question the status quo.

Why do we tear ourselves down with such ferocity? Why is this the thing we have chosen to bond over? Is this really the lesson we wish to teach not only our daughters, but also our sons? We have created a mythical beauty than none can achieve. That in a sense doesn't need quantifiable attributes as long as it remains the menacing shadow that looms in the distance controlling our lives.  We doom ourselves to failure. We doom ourselves to a life of self-loathing. To the unassailable knowledge that we will never be good enough. That physical beauty and spiritual beauty are inexorably linked.  In the moment that realization hits, we achieve unity through our shared worthlessness.

A quick review of my body reminds me that I will never reach that mythical perfection. There are stretchmarks from my pregnancies. There are scars from surgeries and the simple scrapes of childhood. My misshapen feet are a constant reminder of a life-long love of high heels. My skin bears the marks of youthful summers spent in the harsh Australian sun. My hair is streaked with incandescent silver strands.  In more recent years my body has shown the ravages of chronic illness. My skin has changed both in colour and texture. My body shape has altered through the combined effects of age, illness and medication effects. As 40 approaches, gravity is making it's presence felt more strongly as my rear end heads south (and east and west) and my boobs sag in their inevitable quest to find my waist. And I realise now that a choice must be made to accept and embrace these changes, to cut the ties that have bound physical worthiness to that of spiritual worthiness. Or, to continue on the same path and doom my spirit to a slow and lingering death as I continue to long for something that will never exist.

Such positive thinking about myself is alien to my make up. To be comfortable in my own skin does not sit well. It feels as if I am betraying my heritage. As if I am abandoning my familial traditions. And yet I know I must. So much time has been wasted. Generations lost to the plague of self-loathing. We have all been too fat, too thin, too tall, too short,..., too something, for far too long.

So I've made a choice to change. I'm going to ignore that little voice. I'm not going to play the game. I'm going to make a deliberate effort to grant myself the kindness and acceptance that I naturally give to others. I'm going to re-write my internal dialogue. Every line, every mark, to be accepted as a sign post to my life. The good, the bad and the ugly all rolled up in one 30-something package. And every day I'm going to tell myself that that's okay. And every day I will believe it a little more.

Michelle :)

UPDATE: 24/02/17

There's a passage in M L Stedman's, The Light Between Oceans that I have been musing since I put the finished book back on my shelf.

“It occurs to him that there are different versions of himself to farewell—the abandoned eight-year-old; the delusional soldier who hovered somewhere in hell; the lightkeeper who dared to leave his heart undefended. Like Russian dolls, these lives sit within him.” 

I keep coming back to the idea that we have multiple lives sitting inside us. Versions of us pinned to an unseen timeline. Marked by specific events and less distinct evolutions in character. Some versions we pack away with care, wrapped in tissue paper and special boxes to be pulled out when sentimentality strikes, and others we attempt to lock away in strong boxes never to be revisited except when life sneaks in to crack the lid and let an unwanted element out for a run.

I look back at the way I was raised to think about my body and my worthiness. I was left with no doubt that as a woman I was less and that my body would never be good enough. Familial and societal elements conspired to make sure I knew my place, and my place would never be one of my choosing.

"...the knowledge that other people assume the right to decide who you are allowed to be on any given day....Be whatever you like, but do not be this. Do not be loud. Do not be sexual. Do not be prudish. Do not be disagreeable. Do not challenge. Do not be too fat. Do not be too skinny. Do not be too dark skinned. Do not be too masculine. Do not take up too much space. Do not say the things we don't like. Laugh when we tell you to. Smile when we tell you to. Fuck when we tell you to. And you will be free." (Clementine Ford, Fight Like a Girl)

I marked the page when I read the words above. As women we all share the burden of the impossible. It resonated strongly (as did most of the book) and in reading those words I also realised that at 43 and with the passage of years I have come to see those lessons for the lies they are and the yoke of control they represent. A couple of years ago my father expressed his disgust at my political leanings, stating that he never thought "[I'd] grow up to be a feminist and a lefty!" And I remember the warm feeling that radiated in my chest knowing that the toxic lessons I'd learnt as a child were finally erased. That old version of myself was shoved deep inside my Matryoshka doll, fare-welled and most definitely unmissed.

I'm not quite sure what or how it happened. But I sit here typing today and I am okay. Nothing stands out to mark a distinct change. One day I just finally saw it for the bullshit it was.

People I've met. Becoming involved in the local writing community. Becoming involved in the chronic illness and disability communities. Reading recent works by Tara Moss, Clementine Ford and Roxanne Gay and finding elements and explanations of my experience on the pages before me. The lack of compassion that is demonstrated (and sadly escalating) in the current political climate. Deciding that I want different for my children. All of it combined to bring me to this point. All of it has percolated until the version of me today is very different to that it was 7, 17 or 27 years ago. And in that period, the way I respond to my body and who I am has evolved.

My body has continued to change thanks to medications, progressive illness and age. And I'm okay.


I say okay and not fabulous or fantastic because I wouldn't say I celebrate my body but I'm not upset by it either. And I don't relate to it in terms of beauty, which I find such a limiting concept and still placing our highest value on the external. My boobs are my boobs. My hips simply hips. Whether anyone else likes them is no longer relevant. My level of impairment has increased overtime. Conversely my self-acceptance and self-worth have grown. In a society which is fond of framing disability in a negative light and illness as some form of moral weakness it seems incongruous to like myself now more than ever. It also warms the rebellious cockles of my heart to give such perceptions a vigorous and defiant middle-finger.

Beauty is in the eye of the beholder. Screw that. The aesthetic value of my body is mine to decide. In turn my value or worth as a person has also become mine to own. That ownership is a quiet thing. Although my bright green hair and patterned and bright coloured clothing may indicate otherwise. I am who I am. And that word okay pops into my head once more. Four letters that provide a comfort that I didn't know until more recent years.

I have farewelled the version of myself that says I must obey and strive to meet the ever changing goal posts of acceptability. The conservative bindings of my youth are no more. My self-hatred has dissipated (although I will admit a need for self-vigilance. I do need to be always alert for the first whispers of that inner dialogue. Once it attaches that first claw it can be hard to dislodge). A version of myself I have no desire to revisit.

But it sets me apart and there are difficulties in the displacement. When I am back in the familial realms I find it draining. It rends my spirit as the maelstrom of escalating and combative self-criticism whips around kitchen and living room. I have no desire to bond over hating myself and more importantly I no longer believe the lies. The familial narrative is one I can no longer participate in and I wonder what my place now is. I must weave a new relationship. One that preserves my sense of self and can tread those places with safety. I am unwilling to cede ground. And I know the road ahead will be rocky. But the pattern must stop somewhere. And for now it stops with me.

We are not supposed to be static. Survival means adapting to changing circumstances. And sometimes that change must be of our own making. I wrote the words above nearly seven years ago. A person ago. The version of me who tapped away on the keyboard is still in here somewhere but the false comfort of self derision that I was just beginning to understand as destructive, is gone and life is better for the change.

I will cock it up at times. Of that I am sure. Old versions of myself will reach out their tendrils and the long list of ways I am too something will batter my self-worth. But I am far better prepared now.

My body simply is.
I am comfortable in my skin.
Also no longer confined by it.
And I am ready to embrace whatever new version of me develops in the years ahead.

I am okay,
And liberation is sweet.


Wednesday, 4 January 2017

Telehealth: An important tool for patients and medical professionals alike.

[Image: A woman (me) with green hair is wearing a red dress, black stockings and red shoes. She is sitting, looking to her left, in her electric wheelchair on the grassed verge on the side of a rural road. Behind her is a fenced paddock with a large dam and green pasture. In the distance are a line of trees and farm buildings.]

I live three hours from the city in a rural area of Australia. I love the lifestyle. The quietness. The fact that most things I require are within a five minute car ride. Even the beach is only 20 minutes away. But I don't enjoy the fact that all my specialists are three hours away. I was recently interviewed by
Carly Findlay for the ABC about disability, health and being a rural patient and one of the things I spoke about was the need for medical professionals to embrace telehealth

It's not the first time I have written about how fantastic telehealth can be from a disability and rural perspective. Back in November 2015 (back when I first started this post and then promptly forgot that I had indeed started this post) I commented on my FB wall about the joy of having a Skype appointment with my Urologist:

"Oh how I love telehealth. Yesterday I had my urology Skype appointment. We reviewed my meds and my symptoms, discussed my bladder diary, put together a plan, and booked in a review. It was all bulkbilled ($0 out of pocket for those OS). An email arrived 10mins later with charts and appointment information. All sorted.
The ability to Skype with my specialist saved:
*A 6hr round trip to the city
*Parking fees
*Petrol costs
*Buying lunch or coffee in the city
*A day off work for my husband
*Getting dressed.
*Stress on my body with associated payback from such a big day. Especially after being in ED Friday.
*No worry about organising Freyja (our dog) or my son.
*No steps to climb (her office isn't accessible)
The list goes on.
I wish more doctors and allied health specialists (my specialist dietician does Skype, but it costs $90) would use Skype. As a rural patient whose specialists are all in the city (and too rare/weird that I can't just see any cardio/neuro/gastro/urologist) it would save so much physically and financially.
Not all appointments can be Skyped (I had seen my urologist in person twice before as there were hands on parts to do), but for those that can, why can't more implement such a system?"

But it is not just we who live in rural or remote areas that could potentially benefit from increasing telehealth options. For individuals who live in a major city, but through disability or illness are unable to easily mobilise, are primarily in bed, or have mental health issues which impede leaving the home, telehealth would provide an option to engage with their treating doctors or allied health therapist without commensurate physical and emotional cost. With improved access to health care, there are often better long term health outcomes, less frequent hospitalisation and a decrease in excess disability. And whilst I am primarily concerned with improved health outcomes for my fellow patients, financially, decreased hospital admissions and a reduction in excess disability makes sense for a government constantly banging on about a budget emergency and need to cut costs.

State of play in Telehealth in Australia: the Statistics.

Medical Benefits Scheme (MBS) Online Statistics provides information on the uptake of telehealth  up to 1st July 2011 - June 2016.

Since it's inception in 2011, 475,545 Medical Services have been processed, for 144, 400 patients by 13, 815 providers. Of these, Specialist providers accounted for 320,677 services and GPs 152, 106.

The number of services provided has increased since 2011 from 26,049 (2011-12) to 150,634 (2015-16). 

By specialist type, Psychiatry has the greatest proportion of providers using telehealth at 794. With reference to common specialities utilised by Dysautonomia patients, the figures are as follows: Cardiology 226, Neurology 158, Gastroenterology and Heptology 211. And my Urologist appears to be one of the 142 in her speciality willing to use telehealth.

As you can see from the table below rural and remote patients are the largest consumers of telehealth. 

 Services by Patient Remoteness Area (RA) - claims processed as at 30 June 2016
RA Name
Major City
Inner Regional
Outer Regional
Very Remote

Lived Experience of Telehealth in Australia

At present the system is ad hoc with some medical professionals willing to embrace telehealth and even work out bulk billing options (this is often not widely advertised, despite it being a highly desirable option for many patients), to those who refuse outright to use any form of telehealth, be it Skype, phone or email. While others offer the option, but the cost (such as the example above with my dietitian) can be prohibitive for people who are often amongst some of the poorest in the country.

"People with a disability face a significantly higher than average risk of poverty, with 27.4% (620,600 people) with a disability living in households below the 50% poverty line in 2009-10 (as noted in the previous report). A large proportion of people with disabilities have household incomes in between the 50% and 60% poverty lines, so that the risk of poverty rises to 44.5% for the 60% line (based on 2009-10 data)." (Australian Council of Social Service (ACOSS) Poverty in Australia 2014)

Whilst financially the challenge of any medical interaction either in person or via another medium can be prohibitive, the physical and mental stress associated with travelling for an in person appointment with practitioners who refuse, or are reluctant, to employ telehealth can be large. For example: a couple of years ago my GP had to prescribe me significant pain medication just so I could drive the three hours (six hours return not including the appointment and associated wait time) to see a specialist who then didn't touch me, asked about three questions and then ushered me out the door with a "Lets not change anything and see how you go. Come back in six months". Such an appointment could easily have been conducted over Skype, the phone or email, and the pain, exhaustion, and symptom escalation which wiped out the following week, could have been avoided.

There will always be concerns that necessitate in person appointments (I would also suggest that, where possible, in person 1st appointments are a great idea for both doctor and patient to get to know each other and develop rapport), but for those where there is no need for a "hands on" appointment or only minimal investigations required eg bp and hr checks there should be alternatives available.

I would love to see rural and remote medical centres provide a dedicated room where local patients could have their Skype appointments with distant specialists. Such a room could be supported by a specialist nurse who can both facilitate the technical side of the process and provide basic assessments as necessary, eg measuring bp and hr. Some 1.3 million Australian homes (ABS 2014-2015) have no access to the internet due in part to the exorbitant cost of even basic internet connections here in Australia (Australia recently came last on a World Economic Forum's list of affordable Internet) a factor which hits hard on disabled households who, as already noted, are already more likely to be living in poverty. As such, a system as suggested above, whilst convenient for many, would also be a vital service provision to those more disadvantaged members of our society. It would also be of use for those who are unfamiliar with this form of technology and/or mode of communication, potentially providing emotional and educational support throughout the process.

There will always be patients who will require ongoing in person appointments for a whole host of reasons. This should be facilitated as best as possible by relevant health authorities (eg here in Victoria there is the Victorian Patient Transport Assistance Scheme (VPTAS) which provides some reimbursement for travel more than 100kms one way or, if necessary, accommodation costs, for a medical appointment). Identifying those patients that require the added support in person appointments provide is part and parcel of the treating doctors basic practice (one they already do to assess things such as, how often reviews are required, or who needs a follow up phone call, those who need more supervised medication management etc). Assessing, and where possible addressing the factors, medically, socially, financially and psychologically that prevent patients accessing care, accessing care appropriately, or impede ability to self-manage certain aspects of their condition, or in this case, use telehealth, will aid in maximising health outcomes. A win for patients and medical professionals alike. (Note: Increasing health literacy across the whole community would also increase the number of patients who could utilise telehealth.)

Telehealth is not an option for all patients or all medical professionals. It will not solve all the medical access issues faced by rural, remote or mobility-challenged patients. And there are costs and educational processes that need to be put in place on both ends. But telehealth represents an important, new and evolving tool that can be added to the arsenal to improve practice and health outcomes alike.  

Like involvement in social media, it is now an area of service that many patients are actively seeking out. There are doctors like my Urologist who see telehealth as an important tool to help rural patients and a professional time saver for her where she can schedule multiple short review appointments in a smaller time frame. Others that even see the value of offering International Skype appointments for disorders that are rare, poorly understood or serviced around the world (like Dysautonomia). When I see some embrace and understand the role of the technology in health care so easily, it makes me wonder what we need to do to encourage others to make the leap.

I hope one day telehealth appointments will be commonplace. And seen as an important tool in the overall management options whose benefit is clear to patient and clinician alike.


Sunday, 11 December 2016

Saying Yes

"Sit down drink some wine. You are going to be fine". A little out take from date night a couple of days ago. I couldn't drink wine for a lot of years when I first became ill. The last year of two I started having a glass again and it's been okay. I figure if I'm going to be ill anyway why not at least have a bit of a fun reason for feeling so crap. Sometimes you have to balance up life and decide what's important. What brings you joy. And what things are worth the price of payback. And there is always payback. But there's something satisfying when payback is something you enter into willingly rather than it being foistered on you. It's a bit of a "Fuck you!" to the universe, my body and life in general. And it feels damn fine. I do love this old @asos_au dress for its pop of colour. #dysautonomia #upanddressed #dysautonomia#chronicillness#fashion #frockingup #fashionblogger #ootd #wiwt #everydaystyle #40plusstyle #disabledfashion #disabledstyle #ruraldisability #ruralstyle #ruralfashion #Australia #gippsland #greenhair #Spring #chronicstyle #chronicfashion #365dayswithdisability
A photo posted by Michelle Roger (@michelle_roger) on

It's been a huge few months. I look back and I realise I've squished a lot in. I've pushed myself. Gone with my life motto of "Fuck it!" and said yes to things and put myself out there. It's been exhausting and exciting. I want to say it means I've been riding a good patch. But I haven't. Not even remotely. But I've done things. And that is rather glorious.

If I wait for the good patch  I'd never do a thing. I'd still be lying here in bed like I am today. Waiting to get to that point where I feel well enough, or at least on that even keel for a bit, where I feel up to doing something, anything.

Instead here I am. Typing on my dog drool stained laptop, lying in my darkened bedroom, swallowing down vomit, and writing a long overdue blog post. I want to say I've worked out pacing but the last four days of pushing way past my safe physical limits in Melbourne put paid to that that lie. In reality I hate pacing. Hate it with a passion.

I try. I really do. I tell myself I'm going to do it. I write blog posts about it. And then I fall back into old habits. Why after 10 years of illness and increasing disability, and my psychologist training, do I still fail to follow what I know are the recommended ways to manage energy in a life of chronic illness?

Time and again I fall back to spontaneous leaps of frantic action, followed by spectacular falls. But that can occur because I decided to sit on a couch or pot a plant, so I might as well push it, get dressed up and sit in a bar on a Friday night and have a glass of wine with my husband.

Payback is an unavoidable consequence of living.

No matter if I pace, or embrace my inner Mayfly, payback is there to greet me. And I'd rather embrace "Fuck it!" and go out in a blaze of glory aka fall flat on my face as I lose my tenuous grip on bodily control and am once more reduced to a messy, weakened pile of symptomatic sludge.

Because if I wait it'll never happen.

'No', is easy is some ways. Just like excuses.  And I have an extensive list of very valid ones. 'No' can be a really healthy option. When I first became ill my inability to say no was a burden. I put myself last and kept trying to be the woman I was before my body reached the point of no return. I became sicker as a result. Everything I did was half-arsed (actually one eighth-arsed might be more realistic). And I beat myself up for my failures, while simultaneously trying to meet yet another now unattainable role. Because I was conditioned to always say 'yes'. Because I was the go to. The confidant. The one who could always be counted on in a crisis or to pick up the slack. I was the solver of problems and completer of tasks. 'No' wasn't in my repertoire. But now? That useful purpose is lost and mired in unhelpful behaviours.

No is best friends with my anxiety. No is my easy out. When my self doubt rises to choke me or when I lose sight of myself, no reigns supreme. At times the sheer overwhelming nature of illness means 'no' continues to be a survival mechanism, a route to self care. But more often than not, it is also the path that stops me from being part of life. It allows me to crawl up in a space that has the dual process of safety and respite, whilst holding me tight in a really unhealthy frenemy trap.

I walk a fine line with no, with pacing, with "Fuck it!" I make many mistakes along the way. But I am finding that when I embrace the "Fuck it!" side of the ledger I am happier.

Every scrap of payback becomes bearable because it is an issue of my own making. 

And every time I try to force myself down the sensible road of pacing I am more uneasy with myself and my world. Sure there are times where it makes sense. I'll give my old professional self and all the professional and personal advisers a nod and say, yes, pacing helps. It is part of my recovery process when I hit the really bad patches. The patches where a flare is measured in months rather than days. When I think I'm managing things and my body sees that as a "challenge accepted" moment. Those are the times that pacing help. But outside of that?

For me it is not a salve to pain and malaise. It binds me tight and sits uneasily on my shoulders alongside all the other burdens of illness. So I continue to tread, shuffle, stumble, and crawl my way through life with spontaneous short-lived moments of glory.

I drink the glass of wine. I say yes to a talk. I stay up until midnight and roll around the streets of Melbourne. Or eat all the things I shouldn't at a Korean BBQ because it tastes so so nice.

And damn it feels good.


Two things I am glad I said yes to are linked below.

Firstly, I agreed to be part of the Fully Sick Podcast with Jenny O'Keefe. I'd listened to earlier interviews Jenny had done and loved, a) that it was all Australian stories, and b) that it was far more conversational than a regular Q and A. Jenny is such a lovely person and so easy to talk to. I probably said too much and I know I wish I'd rephrased or expanded in certain parts. But hey if I didn't beat myself up and over analyse my actions and words after everything I do it wouldn't be me. Plus, I blame the fatigue and brainfog.

Secondly, I agreed to be part of the Digital Writers Festival 2016. I was part of a panel with Anna Barnes and Katerina Bryant discussing Chronic Illnesses Online. I will say that pushed me. I was exhausted, had some family dramas going on and that disconnect of talking via the net, vs in person is still really hard for me. Not talking on the phone hard, but still a struggle and quite exhausting. But both Anna and Katerina were lovely and I'm glad I had the opportunity to share the time with them.

My first reaction for both was to say no. But I said yes. I pushed through, crashed after, and was glad that I ignored that first reaction.

Friday, 2 December 2016

A path to nowhere.

[Image: A concrete path stops sharply ending in green grass and worn dirt. A woman's lilac compression stockings knees and edge of black and white skirt are seen alongside the joystick controls of her electric wheelchair.]

Once upon a time there was a disabled woman who lived in a medium-sized country town. After years of dependence and isolation she was finally bequeathed a magical wheelchair. This wheelchair had the power to bring back her independence and allow her to access the world around her in her own time and without a man servant/husband/son to push her. She would no longer be bound to the whims of time off, or after hours, or being propped where her man servants decided to prop her instead of where she wanted to be.

The disabled woman was excited to receive her chair. She promptly hopped in and took her first ride to freedom. She rode around her housing estate and promptly stopped as the foot path ended in a pile of dirt and stones and a busy country road. Undeterred she tried for another path only to find that too ended in grass and little more than a foot worn dirt track two hands span across. Undeterred she once more took off only to find all other exits leading to the main road between her town and the next. Dirt and gravel or thick potholed grass instead of foot path. Trucks carry livestock and farming goods thundered towards her at speed. The woman could not leave her housing estate. She was once more at the whim of a single car that could carry her chair or a public carriage service that could be employed to lug her for a substantial price where she wished to go. If it was available. And she wasn't in a hurry. Or knew the day before what she needed to do and had booked in advance. The disabled woman was frustrated and sad, and full of expletives and rising anger.

Earlier this year a path was proposed that would lead from the housing estate I live in to the rest of the town. I was excited. Such a path would mean that I could finally leave my house unaccompanied and go for a coffee, to the library, local gallery or take a turn in the park. I filled out the surveys and attended the community consultation sessions. My husband spent time on the phone and filled in the same surveys. I went to the council meeting and had my say, as did my husband. Whilst I was not happy with the eventual route the path would take due to it's isolation, I resigned myself to the fact that this path would still at least allow me to access town and I could always invest in a tasar or add a battering ram to my chair. It was supposed to start being built by the end of 2016. But week after week went by and none of the usual signs of an upcoming infrastructure build eventuated. So I contacted my council. I was informed that not only would construction not be starting by the end of this year but that tenders would only be sent out early 2017 for the first half of the path only. First half. Not even the whole path. Not to build. But for the tender process. Which will take, well who knows. The second section. Well at present it is supposed to be completed at some point within the 2017/18 financial period. But there'll be a first half. At some point. I'll get to roll along to another edge. Another slab of concrete ending in grass, gravel and frustrated access.

At the council meeting I tried to impress on the councillors that this path was not just about an alternate way to walk kids to school or a pretty walk to run with your dog, that for people like myself it is about a lifeline to the rest of the town. That this path represents the removal of a financial impost (the use of an accessible taxi service to carry me and my wheelchair) that other members of the community need not pay thanks to the choices that come from being able-bodied or being able to drive. That at present to simply go into town independently to have a coffee I am already slugged with $30 long before I consider a long black at my local cafe, or head to the library to check out a book. That a need for the hospital or medical centre would also attract the same fee. That this path represented an independence that has been lacking in my life since moving to this town nearly three years ago. That as much as I want to participate in my community I am bound by costs with no alternative offered up. That dependence is foistered upon me by the lack of a path. And that I am not alone. There are disabled people, frail people, people who at present are not disabled but could become so at any point in time. And that all of these people required a path for the most basic of needs, access.

Image: an empty council chamber. Blue-grey carpet and a circular wooden table set up with microphones, coloured water bottles and name tags sit in front of a lectern for community members to speak. A lectern as I found out not set up for members of the community who may be in a wheelchair and unable to stand.]

I am resigned to my concerns about safety being wiped away by “there'll be lights” (how that helps in the day I'm not sure) or that there was a reliance on the presence of other users (which will primarily be early morning or after work, not at all during the day). That the path is now to run through an isolated park situated next to open farm land and behind an industrial area and stock yards, because this is a “prettier location” a supposedly safer location. I am not resigned to the fact that this path is not seen as a form of accessibility rather than a nice place to walk the dog or kids to school.

I received this email on the same week as the council was celebrating Social Inclusion Week 2016 with events on all week. None of which I could attend without paying the roughly $30 for a round trip to town. And I sit here with International Day of People with Disability coming up on the 3rd of Dec trying not to get angry about access, (or that after contacting my local council again I am told that there are no events planned for IDPWD on the 3rd. )

To add insult to injury this story about the giant sink hole in the Japanese town of Fukuoka. A giant sink hole involving significant engineering filled in a week. A week. That such a large and important project could be rectified in such a short turn around and my local council can't build a path for two plus years.

Do I hassle my council again? A tiring process that involves large walls of red tape to beat my head against. Should I attend another meeting to be say my piece, when I know I will be ignored or patronised (eg last time I was there a councillor suggested that I and a member of council who was also a wheelchair user could race together at the opening of the path). Should I see them go wow I hadn't considered that, but I'll ignore that factor anyway. Should I have to? Should I or any other disabled person living in this large and expanding section of town have to fork out even more money to do the most basic of activities such as going to the doctor, to buy some milk, or have a cup of coffee? All activities which support local businesses.

1 in 5 people live with disability. 1 in 5 people rely on basic things such as pathways to access their community. Don't talk about social inclusion when you are delaying pathways that would increase inclusion. Don't talk about social inclusion if I and others in other sections of the town without paths, pay $35 for the privilege of a coffee at a local cafe by virtue of my disability. Or are left to stay home yet again doing loops of a housing estate trying not to go stir crazy.



Sunday, 30 October 2016

Dysautonomia Awareness Month 2016 Guest Posts. Devon. Living with Dysautonomia in Rural Kentucky.

Next up for Dysautonomia Awareness Month 2016 is Devon who lives in a rural part of Kentucky in the US. It's been really lovely to share a lot rural voices this year. Whether it be here in Australia the US or any area of the world patients living in rural areas experience a lot of similar issues. Things like distance, lack of facilities etc can make life difficult when you're not ill, but add in chronic illness and it ups the ante. Thanks for sharing your story Devon. 

My name is Devon McCormick. I am a 33 year old female preschool teacher from southern Kentucky. I am not married, but I have a boyfriend of nearly two years. I was diagnosed 6 months after we started dating.
I live in a very rural area. We have a Wal-Mart, three red lights, and a Taco Bell. I live alone, but I have a very close relationship with my family. I was diagnosed in April 2016 with hyper POTS at Vanderbilt by Dr. Biaggioni. I was misdiagnosed prior to that. I also have asthma, chronic allergies, and NCS. I have been sick since March 2015. I have had NCS since I was 5.

[Devon pre-sick is pictured above. 
The picture at the beginning is of the is Devon once month after becoming ill.]

I am a rural Southern Kentucky girl through and through. I wear my pearls to my teaching job Monday through Thursday and Friday through Saturday its school colors or UK blue. Sunday is church wear. We say ya’ll and bless your heart as both a term of endearment and insult without batting an eye. Life was good and simple.
My town was so rural that the biggest event was the new Taco Bell opening up. The nearest mall was 70 miles away. I had big dreams but never wanted to leave. I am highly educated with a bachelor’s and double master’s degrees in education. The ability to drive and leave this town gave me the ability to become educated. I was happy to teach in the elementary school I attended. I wanted to be the best at what I did.
Life was moving along well. My career was going well, my family life was fine, and I was Miss Independent. My biggest dream was to attend Vanderbilt and get my PhD. One day, I fainted. No big deal, people faint all the time. I hit the floor. Something wasn’t right. I just couldn’t seem to rally back from this. It was the first time in my life I wasn’t able to come back from something. I have always overcame every hardship and yet something as simple as standing would knock me down. I had hit the wall.
Suddenly, I couldn’t work anymore. I couldn’t drive. My mom had to move in with me. She helped me shower, dress, feed myself, and even use the bathroom. I was fainting 20-30x a day. A simple tilt test would have revealed the answer. However, it wasn’t done correctly. My grandmother worked for an amazing cardiologist who saw through the misdiagnosis and gave me some medication that helped some. Thankfully I returned to work and my mom was able to return home. I was still weak and having seizures.
Finally, I saw a top notch neurologist at Vanderbilt. He then referred me to the autonomic clinic there. The correct tilt table revealed I had hyper POTS. A simple beta blocker taken three times a day and lifestyle changes began making such dramatic differences. After 13 months, I was able to drive again. I also started getting my strength back. I always said I wanted to go to Vanderbilt. I should have been more specific and said as a student and not a patient!

It’s been 15 months since POTS entered my life. I am not the person I was before. In some ways I am better! I am stronger. Nothing will stop me. I will push on and persevere when others will quit. I teach preschool full time. It’s exhausting for a healthy person, let alone a chronically ill one. There are days when I am so tired I can barely stand and am angry and sad. I question why this happened to me. However, I will not stop!