When being a woman is an impediment to medical care: Dysautonomia

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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