It’s a Damn Shame

 

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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.