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In 2007 I was on the search for an
answer to a series of unusual and debilitating symptoms that had
first developed in 2006. I was working in health, on a neurological
and geriatric rehabilitation ward. I knew my way around the health
system. I knew people had poor experiences with that system at times,
but never thought I would be one of them. So I was unprepared as the
General Physician sat before me and five minutes into our
consultation he uttered the words “when a woman your age comes in
with these symptoms it's always in their head.” I knew where he was
going when he began our session by asking me a haphazard series of
questions straight from the Beck Anxiety and Depression Scale.
He had me pegged before I even walked in the door. And I'm sure my
tears of anger and frustration fit perfectly into his diagnosis. As I
sit here today with a cardiac pacemaker beating away in my chest and
the diagnosis of a neurodegenerative autonomic disorder, those words
still burn. And they burn even more knowing that I am not alone in my
experience.
A quick review of patient support
networks reveal a clear pattern of attributing physiological symptoms
to a mental health diagnosis. And as many of the reported comments
reveal, being female is a clear factor in this leap to a
psychological aetiology. Comments range from being “too young”,
or “too pretty”. That a “boyfriend”, “husband”, or “baby”
would cure them. Other terms from “Working Women's Syndrome” to
“Bored Housewife” are used. And diagnoses such as Anxiety and
Depression are doled out with alarming regularity, and frequently
without referral to an appropriate professional for official
diagnosis or treatment.
Dysautonomia
is an umbrella term for a collection of illnesses that affect the
Autonomic Nervous System, the body's autopilot. Many forms appear to
have a direct bias towards women (for example, Postural Orthostatic
Tachycardia Syndrome is thought to have a
5:1
bias in favour of women) and
pregnancy
is known to be a trigger for symptom development. This collection of
disorders remain relatively unknown in medical and lay communities
alike. As a result, when patients present with what can be a times a
group of vague and disparate symptoms, they are often misdiagnosed
with a range of mental health diagnoses.
In truth whilst poor
recognition and lack of appropriate referral is a concerning factor,
more so is the pervasive trend of diagnosing patients with mental
health conditions, particularly if female, when diagnosis is unclear.
Often these diagnoses are based on old societal notions of the weak
or hysterical female. In her post,
The
Woman Patient: Is Her Voice Heard?, published on the
Sharing
Mayo Clinic website, Dr Mary O'Conner, Chair of the Department of
Orthopaedics, Mayo Clinic Florida examines the way women are
perceived societally and by the medical community:
Of
course we want to believe that we see everyone as equal. But in
reality we do not. We are socialized to believe that women are more
likely to have pain than men, or at least are more willing to
complain of pain than men. Furthermore, women are seen as the "weaker
sex" and our decisions may be negatively influence by the "time
of the month" or hormonal status. While we know that there are
true biological difference in pain pathways, physical strength and
hormonal levels, these differences are framed in a negative light for
women. Doctors see female patients through this spectrum.
This
trend is not restricted to complex disorders such as the
Dysautonomias. Simply being female is a significant factor in access
to appropriate health care across numerous disorders. Earlier this year the
World
Heart Foundation, recognised a pervasive problem relating to the
treatment of women with cardiac conditions. The group called for an
end to gender bias revealing that women who
present with cardiac events often receive poorer diagnoses and follow
up compared to male counterparts. An excellent series of articles on
this issue can be found on the
My
Heart Sisters website. With problems identified from the way
research is conducted, to the way women are treated when they present
at a clinic or the ED. In some cases the outcomes of these biases,
unconscious or conscious, are deadly. A
recent
high profile example from the UK, demonstrates that this issue is
not confined to any particular country or diagnosis. Dr Lisa Smirl, a
Cambridge educated university professor, died of Lung Cancer at the
age of 37, after repeatedly being told her symptoms were related to
Anxiety of Depression. She died a year after her cancer diagnosis was
finally confirmed.
A common complaint from patients of
both genders, is that they feel unheard by their doctors when trying
to explain their symptoms and concerns. However, research suggests
that female patients are at a greater disadvantage even at this
preliminary stage of the diagnostic process. A paper from
Family
Medicine entitled
Speaking
and interruptions during primary care office visits, found
that gender was a significant factor in the way residents interacted
with their patients. Whilst female practitioners interrupted to a
lesser degree than their male counterparts, both groups interrupted
their female patients far more than their male patients. Such
interruptions are an indication that the doctor is not actively
listening to their patient. Instead pursuing a preconceived
diagnostic path. It is this sort of dynamic that leads to a break
down in doctor-patient relations and subsequent misdiagnosis.
The problem is two
fold. Misattributing physiological symptoms to mental health
diagnoses, further stigmatises those with psychological issues.
Depression and Anxiety in particular, have become the catch all for
patients with what many believe are not
real symptoms. And in doing so
they further minimise and trivialise these very real illnesses. Even
should a patient have a comorbid diagnosis of Depression or Anxiety
(recent statistics show these are commonly occurring in the
population and especially in chronic illnesses) they do not provide
some magical protective factor that means that no other illnesses can
occur. In a 2012 paper in the
Social
Psychiatry and Psychiatric Epidemiology, February 2012, a
review of 30 general practice attendees across Victoria, Australia
revealed that, “The prevalence of probable depression increased
with increasing number of chronic physical conditions (1 condition:
23%; 2 conditions: 27%; 3 conditions: 30%; 4 conditions: 31%; 5 or
more conditions: 41%).” To add to this issue, evidence
consistently shows (see
CDC,
2011,
BMJ
2013 for review) that those with mental health diagnoses have
consistently poorer health outcomes and lower life expectancies,
posited up to 30yrs in some cases. In part due to the stigma attached
to such diagnoses but also the issue that any new symptoms are viewed
through a mental health lens, and dismissed as another manifestation
of the underlying psychiatric diagnosis. Patients report hiding
previous mental health issues for fear of further stigmatising. And
even those who wish help fail to seek it for fear of the diagnosis
impairing future health care.
Secondly, this misattribution means
that manageable, and potentially treatable, diagnoses may be
overlooked and diagnosis delayed. Patients are left with increasing
poor health and disability. In some cases, by the time diagnosis
occurs patients have been forced to stop working, leave school,
relationships and finances are in turmoil. Patients are left with
increasing and untreated symptoms that impact on every aspect of
their lives. For example,
recent
large self report data (703participants) complied by
Dysautonomia
International on the most common Dysautonomia subtype
Postural Orthostatic Tachycardia Syndrome (POTS), reveals that many
patients are waiting on average six years to diagnosis, although
there are cases reporting a 20-30yrs wait from initial symptom
presentation to diagnosis. This data also demonstrated an incredibly
high misdiagnosis of Depression and Anxiety, nebulous “Stress,”
and “All in your head,” in the population. In total 83% of
respondants had been received some form of mental health diagnosis
prior to being diagnosed with POTS.
Psychology
and Dysautonomia continue to be a contentious area for patients
and the medical community alike. Yet
available
research reveals that Dysautonomia patients are no more likely to
develop Anxiety and Depression than the wider community when
autonomic symptoms are controlled for in diagnostic tools.
“It's
all in your head,” in all it's incarnations, has become a unifying
experience for many women. The idea of being bothersome or wasting
the time of various medical professionals is a continual theme found
on patient support boards. Whilst men can also encounter this phenomenon on the diagnostic journey, an analysis of the comments themselves reveal an underlying gender issue, with references to child bearing and relationships common. This problem is pervasive across numerous
diagnoses and countries such that simply being a woman is an
impediment to receiving appropriate diagnosis and treatment. I often
wonder where I would be if I had listened to the General Physician I
saw all those years ago. Thankfully, his attitude fuelled an anger
and determination that led me to an appropriate diagnosis and treating team. But a
worry persists for those patients who are unable or unwilling to
challenge their doctors and would simply accept such a diagnosis.
Thus never receiving the appropriate diagnosis and treatment they
deserve. It is time for the medical establishment and the patient community
to step up and work together to demand better, non gender-biased
treatment for all.
The following are a small selection of
experiences of female patients from Australia and New Zealand, who
were later diagnosed with a form of Dysautonomia. Whilst some show a basic disregard for patients and their experiences, many highlight the inherent bias in the way symptoms are veiwed:
POTS
(Postural Orthostatic Tachycardia Syndrome); NCS (Neurocardiogenic
Syncope); OI (Orthostatic Intolerance); IST (Inappropriate Sinus
Tachycardia); ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome); EDS (Ehler's Danlos Syndrome)
"I
would really like to see one of these "so called" Episodes
you people say you have, (Dr then rolled his eyes). I think you just
started hyperventilating and you need to breathe into a brown paper
bag." Said by a ER Doctor, the 1st time I went to the hospital
after a faint at my clothesline. This was said with no prior
communication, no questions asked, no tests done.
J, 36, Australia
Diagnosed: Dysautonomia, including POTS
with NCS and recently IST
Time to Diagnosis: 8 Months (Nov 2011
to July 2012, age then 34)
Misdiagnosed: Anxiety, Stress,
It must all be because you had a
bad childhood and you are depressed" (I didn't and I wasn't),
said by a Rheumatologist prior to diagnosis.”
B,38, Australia
Diagnosed: POTS and ME/CFS
Time to diagnosis: 2 Years
Misdiagnosed: Bad neck, Migraines,
Vestibular Neuronitis, Fibromyalgia, Depression.
I've had symptoms since I was a
pre-teen. My diagnosis happened in a neurologist's office here in NZ.
He said "I don't know why you are here..." when I walked
in. "...you people don't need a team of doctors, you just need a
cardiologist and to get on with it". I began to systematically
explain my problems. He began to look at my hospital record. When we
had gone through all of it and he had done a thorough neurological
exam, he said "Well. No. I don’t think you have POTS. You have
Pandysautonomia. Pan meaning all. Dysautonomia meaning dysfunction of
the Autonomic Nervous System. It will continue to progress and one
day you'll stop breathing, but that is usually later. You should go
and do the things you want to do with your family now. I don't feel I
need to see you again. Any questions?" I was numb. Shocked.
Angry and confused. He stood up and indicated the door. So I stood up
too. I wasn't offered any kind of support or referred to any
organisations. I went home and began the process of understanding
exactly what Dysautonomia is through my own research. I am now 39
years old. I was 37 at the time of the diagnosis.
Rachel, 39, New Zealand
Diagnosis:
Pandysautonomia
Time to Diagnosis: 30 years
Misdiagnosed: Abdominal migraine,
Depression, and POTS
You seem stressed, antidepressants
and lots of rest, relaxing music, massages and you will come right
said by an endocrinologist.
H 29, Australia.
Diagnosed: POTS and NCS
Time to diagnosis: 15 years 2014
Misdiagnosed: Depression, Anxiety, A
young woman with kids.
After passing out in one
endocrinologists waiting room, I was told to "Get up."Then
dragged off to his office where I was shaking, pale and slurring my
words. He kicked my husband out of the room and asked if he was
beating me and If I was there looking for attention. I started to cry
and said no my husband is amazing and he had it all wrong. So he
wrote me a script for antidepressants and told me to get more sleep.
He leaned over me and said "There is nothing wrong with you"
I left so embarrassed and I was diagnosed one week later by a
cardiologist.
Before diagnosis, when I was still working, I
tried to explain to a GP about my exhaustion and the fact that I
seemed to be getting two viruses a month. He suggested I drive home
every lunchtime and take a quick nap.
After a 15 minute consult with a
cardiologist, she said: “This is pretty much somatising.” When I
asked her to explain what it was about my story that had led her to
that (very complex) diagnosis she said: “I see so many women like
you who have nice husbands and young children and are high achieving
who express their emotions through physical complaints.” When I
explained that I am a person who knows my feelings very well and have
no trouble showing or articulating them she waved her arm
dismissively and said: “everyone who is told they’re somatising
says that. No one likes to be told they have a psychological
problem.”
A, 43, Australia
Diagnosis: ME which includes POTS and
autonomic dysfunctions amongst its symptoms
Time to diagnose: 10
years.
Incorrect diagnoses: Raising young
children, childcare bugs, caring too much about other people, Pelvic
Instability, Insomnia, Irritable Bowel Syndrome, Worried Well,
Fibromyalgia, Birth Trauma, Somatoform Disorder, Somatic Depression
with Anorexia Nervosa, focusing too much on my body, listening too
little to my body.
I was sick for 15 years before I was
diagnosed with dysautonomia. Even now, my specialists aren’t sure
what’s causing my dysautonomia - I have EDS and a mast cell
disorder but it seems there may be something more as well. For most
of that time I had the useless catch-all labels of CFS and
Fibromyalgia which as far as I can tell is just a bunch of words that
mean "We have no idea, stop being difficult and go away."
It wasn’t until my dysautonomia was diagnosed that I started to be
prescribed medications like Florinef, Midodrine, and Propranalol
which have helped me to get a lot more functioning back.
R, 39, Australia
Time to diagnosis: 15+ years of being
housebound and bedridden.
Before any diagnosis was given, the
GP refused to give me any more referrals to specialists to explore
why I had so many strange symptoms, telling me "there comes a
time when enough is enough and you just have to learn to live with
your symptoms." And from the same female GP "you'll feel
better when your triplets start school, like I did with my twins."
J, 43, Australia.
Diagnosed: EDS,
POTS, Pineal Cyst.
Time to diagnosis: 1.5yrs or probably a lot
longer (2012)
Misdiagnosed: Depression, Anxiety, Silent Migraine.
GP "I don't think you are sick.
I think your are just suffering from anxiety", ME "then why
is my lying HR normal and my standing HR in the 150s? GP "you
must be scared of standing up" said despite my diagnosis of
Dysautonomia by two neurologists.
"I know you people THINK you
have a condition" said by a cardiologist after I raised the
possibility of POTS.
A, 41, Australia.
Diagnosed: Primary Dysautonomia.
Time to diagnosis: 3 months (2010)
Misdiagnosed: Atypical preeclampsia,
Postnatal Depression/Anxiety
I'm now 45 and 4 years out of the
workforce. I've been looking for answers since I was 17. Always
diverted to gynos and psychs, even after I fainted at work in 2010,
the hospital told me I'll be ok it was just a faint. I kept telling
them I did not feel right and every time they discharged me I would
faint before I got out of the door. After 2 weeks of this nonsense I
left in disgust and went to my GP. By pure coincidence he had just
been to a seminar held by my current cardiologist. I was referred to
him for a TTT and finally diagnosed. Still struggling with the psych
imprint.
T, 45, Australia.
One cardiologist (male) told me that
I needed to relax, that if the first tablet didn't work I had no hope
and that he had "a number of young, thin, high achieving women
who simply don't drink enough". He then stopped talking to me
and spoke to my husband for the rest of the appointment. Needless to
say I didn't go back.
M, 41, Australia.
Diagnosed:
Progressive Neurodegenerative Automomic Disorder. Including NCS and
OI
Time to diagnosis: 1yr for original NCS diagnosis
Misdiagnosed:
Depression, Anxiety, Working Woman's Syndrome.
"Are you sure you aren't just
having panic attacks when you stand up?" (ER doctor, post
diagnosis of POTS)
J, 30, Australia
Diagnoses: POTS/dysautonmia
Time to diagnosis: 5 years to diagnosis
Incorrect diagnoses: Panic Disorder,
Nocturnal Panic Attacks, inactivity/unfitness
Thank you to all who shared their
experiences.
Michelle
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