It’s a Damn Shame




This morning I was chatting online with another Dysautonomia patient.  She has Neurocardiogenic Syncope, one of the types of Dysautonomia, where I have Pandysautonomia, another type. We are both in the same city; we are from similar socio-economic backgrounds and both fall into the same District Health Board zone. We have seen the same doctors.  But the treatment we have both received has been different.

On seeing the same specialist, about the same issue (recurrent fainting), she was told she was ‘faking it’. I was given a room of my own in the public cardiac ward and fitted with a pacemaker to stop the faints from occurring. I don’t know the ins and outs of her medical history, so this is not an entirely objective comparison.  But I know that her new cardiologist takes her condition very seriously indeed.  So seriously he admitted her to the cardiac ward before and after recent surgery so that he could monitor and treat the various issues anaesthetic drugs and surgery would create with her autonomic nervous system.  She is no ‘faker’.  Another friend with Dysautonomia, in another part of Auckland, has been abandoned by her District Health Board altogether.  She struggles, largely bedridden, without medical care of any kind.

Many patients with our diagnosis endure consultations with Specialists who cast aspersions on our authenticity.  I can only conclude, that ‘fakers’ must occur frequently in doctors offices.  Otherwise, I can’t understand why it would be such a ready conclusion to be leapt upon?  Perhaps, when the answers aren’t easy to find, some doctors find the alternative of ‘the faker’ patient more palatable than saying “I don’t know”?  It must be difficult as a doctor, as someone who relies not just on their years of experience but also on their mental accuity, to consider that they don’t know what is wrong.  Is dealing with not knowing, ever part of a doctors basic training?  Do they cover what to do when they are faced with a patient who doesn’t fit within their current paradigm? Perhaps medical school is where a doctor learns to make the judgement of “faker” in the first place?  Doctors, Specialists, I would love your perspective on this if you are reading.

I remember sitting in a doctors office once.  I was very ill.  I’d been fainting for most of my post-adolescent life. He explained that were I a young woman, he might think to ask me about my relationship with my mother.  “Some young women who don’t get on with their mothers have a tendency to hysteria and unexplained ‘fainting’…” he mused.  I waited for him to smile and tell me that thinking like that used to occur in medical circles oh, around the time of Austen.  But he wan’t joking. He continued “you seem a reasonable person…” and proceeded to discuss the treatment he had planned for my actual symptoms and the signs visible in my tests.

I think I was a lucky one.  My profession lent me some respect.  My manner seemed ‘reasonable’. My age at diagnosis was clearly an advantage (lucky me, I’d been sick for longer than some of those poor ‘young women’).  My test results were dramatic. The fact my husband works in the Health Sector and was a familiar face possibly also lent some significance to my case.  But should it need to?  Should younger patients have the onus placed on them to prove that they are in fact emotionally stable?  Shouldn’t objective tests be recognised and patients treated impartially?  Should doctors not err on the side of “I don’t know” rather that “you are a faker”?!  Is it so painful to not know?

We rely on doctors to be scientific; objective.  But doctors are human. The sum of their personal and professional experiences contributes to their professional values.  They come to their praxis from their own unique place on the values continuum. They have ideas already entrenched, in relation to some conditions. Sometimes these ideas are there because of experiences with previous patients.  I did once see a doctor who referred to people with my diagnosis (then, it was POTS), as “you people”. Sadly, fainting has for centuries been considered a ‘female failing’ a sign of a ‘weak constitution’.

Michelle Roger, an Australian Dysautonomia Advocate and Health Activist, recently wrote an excellent article about when being a woman is an impediment to medical care.  I urge you to read it. It’s an issue that needs to be discussed more in community forums. I and other patients with rarely diagnosed diseases or chronic invisible illness welcome any opportunity to discuss these issues with medical practitioners.  It all starts with the sharing of articles like Michelle’s.  With engaging in discourse about why some doctor’s offices provide this shaming and difficult experience for many genuine, female patients.  It’s not on.

It’s a damn shame. Being laid on the wrong shoulders… and it’s got to change.

A Problem Like Maria


One night we were talking about sharing the load of the dinner time clear up.  You know, a bit of a family meeting about chores and rosters. When you have a big family, chats like that need to happen from time to time.  Then:

“It’s not like you have to go to work or anything”.

The comment hovered, mid-air in front of me, from one of the teenagers.
I took a deep breath.  And gathered my thoughts.

I remember; being a teenager and feeling full of righteous indignation about the state of the world.  I believed that my rudimentary understanding of the world was in fact, a finely crafted and polished gem of wisdom.  I felt all injustices, chiefly my own, and took it all at face value.  I spent a lot of time thinking how unfair it all was. I thought, back then that I knew the answers to all the world’s problems. And when it came to my domestic world, I certainly thought something similar about my own mum.  I mean, it wasn’t like she had to go to work or anything. In fact, she even had help.

When I was a kid, we lived in Papua New Guinea.  As was commonplace there, we had a girl who worked for us, helping with housework.  Well, everything except our jobs.  Our chores, thanks to my uncompromising mother, were firmly off the to-do list in the interests of our character development. Our Haus Meri’s name was Maria. She was only sixteen when she first came to work for us.  She was still with us when she got married. And when her husband took to her with an axe to prove how much of a big man he was, it was our house she came to from the hospital.  She survived that attack and went back to him. And later, after her baby Hanna was born, she stayed on with us.  Then we went to boarding school and Maria was still there, helping Mum with everything.


Screen Shot 2014-07-08 at 1.59.42 pm
(picture credit below)

My Mum had a different approach than that of most expat ladies with house girls.  She insisted on eating lunch with Maria and would always make the lunch herself.  When Maria was caught stealing rolls of toilet paper, instead of summarily docking her pay, she asked questions and discovered that Maria didn’t have enough money for sanitary products.  Mum began supplying her with them. Maria’s pay was small, and with it she supported eight people.  Her life was difficult and Mum made sure that her time at our place was calm, ordered and not strenuous. She gave Maria food, clothes and motherly care. Sometimes, they sang together, gospel songs in pidgin English. I have an enduring image of them both, sitting on our sofa with their feet crossed and tucked beneath their chairs. Ladylike. Maria was a shy, smiley, lovely person. My mother was determined to do it her way despite being chided by her expat friends for her ‘too soft’ approach.

She was determined about a lot of things, my Mum.

Around that time; when I was about fifteen and a sophisticated madam, travelling home from boarding school on the plane every holidays, I thought I was ‘the business’.  I was full of my freshly minted ‘maturity’ and there was nothing that I didn’t know. Except for most things.  I remember returning home one holiday break and feeling so superior. I unpacked my things and called Maria in.
“My sneakers are dirty, Maria.  Can you clean them?”  I asked, loftily.
Maria nodded her head and quietly took my sneakers, padding softly out of the room on her bare brown feet.

I flopped onto my bed and contemplated what I would do over the holidays.

And then, my mother’s face.
White-lipped and syllables clipped.
“GET. UP.”
“-How dare you!”.  She stretched out each word, in that very scary, angry-quiet voice.
“-how dare you presume to tell Maria what to do.  Who do you think you are!?”

For the rest of the day, Mum had me do Maria’s jobs.  All of them.  Maria sat, bemused, pretending to read the magazines my mother had handed her.  I made lunch for them, following Mum’s instructions to the letter, while they chatted. I kept doing her jobs until they were done, long after night had fallen and the geckos were gathering on the fly screens. By then, Maria had gone home.  It had taken me so much longer to do her jobs because my work ethic wasn’t nearly as efficacious.  And I was working under the heavy load of humiliation and shame.  By the end of the day, I got Mum’s point.  Loud and clear.

Because it wasn’t like I had to go to work, or anything.

After the day’s work was finished, I cleaned my sneakers. And I etched that powerful lesson into my memories.  So when those throw away words were said to me at the table recently, I paused for this memory to wash over me.  And I explained exactly what ‘my work’ constitutes.  It probably didn’t make it past the teen-auto-protect-mind-shield, but I tried.

I said that ‘work’ is more than just what you get paid to do.  Work is how you get your job done.  Your job begins with you. But it isn’t finished until you have taken care of everyone in your circle, too.  It’s the opposite of being self-obsessed.  It’s looking out and seeing what needs to be done and finding ways to get it done. Somehow. Sometimes that job is much bigger than any kind of work you might get paid to do. The job of being a good human, chronically ill or not, is far more than nine to five.

And I know; on that day back when I was fifteen, my Mum did one of her best day’s work.


R.I.P Maria.
We were sad to hear that Maria died of Tuberculosis not long after our family left Papua New Guinea.  She was a tiny, beautiful person and I do so hope that her daughter Hanna is safe and well, wherever she might be.

The girl pictured above is Manu, a young Papua New Guinean girl featured in the ABC documentary ‘I am a Girl’. I will find a picture of our Maria when our renovations are finished.  If you would like to learn more about the documentary, about the plight of girls across our globe, click here:–i-am-a-girl-doco-feature/4927910