Wednesday, 12 November 2014

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

(source)

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

11 comments:

  1. This is shocking, Michelle. Can't believe doctors are so blinkered.

    ReplyDelete
    Replies
    1. It is so pervasive, Dorothy. I have encountered some amazing doctors over the years, but there have been so many that act as if it is all a figment of my imagination. The examples at the end are only a small sample of what goes on. If I'd ignored the heart aspects of my presentation and accepted it was all in my head where would I be? My pacemaker keeps me upright and breathing.

      Delete
  2. Bloody brilliant! Thank you for telling this, which is unfortunately the story for so many

    ReplyDelete
    Replies
    1. Thanks Anna. It needs to be spoken more openly about and more stories shared. So glad I could add my small voice to all the others.

      Delete
  3. Although my daughter's neurologist has mostly been really terrific, we did get a taste of that this summer. My daughter has epilepsy with complex partial seizures that secondarily generalize. After a bad week last summer in which she had 5 seizures, he upped her medication. After that she stopped having tonic-clonic seizures, but began having 15-60 second episodes that felt just like her pre-seizure aura. These were happening several times a week. My thought was that these were partial seizures that were not progressing. Her neuro scheduled an video EEG and said that he wanted to show us they were not seizures because he was pretty sure that they were some type of "anxiety or panic reaction."

    Now, my daughter does have some pretty bad anxiety issues, but they don't show up as 30 second episodes of "feeling weird"! The EEG did not show seizure activity during the events, so he told us they were "not seizures" but an "anxiety reaction." She kept having episodes, some VERY intense, and then one month later had a strong aura, followed 45 minutes later by another aura and a tonic-clonic seizure. At that point he revisited his opinion (and admitted that many simple partial seizures do not show up on EEGs), and another look at the EEG revealed some abnormalities; she is now considered to have refractory epilepsy, is scheduled for a long-term video EEG next week and is being evaluated for brain surgery.

    The thing is, and the reason I am writing this all out, is that I don't think he has any idea how his dismissal of her symptoms impacted us! I spent months wondering if she was having "psychogenic" or somatic seizure symptoms and even now I still find myself questioning what is going on - even when I KNOW that her EEG is abnormal and that she is having seizures. His "diagnosis" caused anxiety, self-questioning, feeling like we were crazy, and a several-month delay in adequately treating her seizures. He is a young doctor, and he really does listen, so I am hoping to have an opportunity to let him know how that felt from our side. Hopefully his future patients will not be left feeling the same way we were.

    ReplyDelete
  4. Thank you for this very comprehensive and important post, Michelle! I'm actually not shocked by this due to my own experiences and those of others I know personally. This kind of medical incompetence needs to stop and speaking out is the first step.

    I did want to mention a small error only because this piece needs to be shared and will hopefully be read by many, and the meaning of this sentence is confusing with the error. "...the catch all for patients without what many believe are not real symptoms." I believe you meant to say with instead of without.

    ReplyDelete
  5. I can relate very much to this. I think I was lucky that I had been seeing my GP for about 5 years before I got sick. So she 'believed' something was wrong.
    I've been to ER about 8 times in the last 6 years during my illness. Three of those times was the weekend I got suddenly sick. That weekend the first visit I got sent home with pills for an UTI (even though no bacteria grown), then a kidney stone (even though no stone on CT)....then the last visit I got sent home with a valium pill. That pretty much set the tone of what I could expect from Dr's over the next 6 years.
    I have had dr's send my family out of emergency rooms and ask me if I'm pregnant and hiding it or if I have an eating disorder (when I replied with noooo I want to eat....I so, so want to eat......the dr replied by saying sometimes the brain plays tricks on us)....
    A young intern dr once got angry at me for an IV not working properly, half way through the saline wouldn't flow and it got 'stuck'. He accused me of maneuvering my arm in such a way that I was purposely trying to stop the saline flow to 'extend' my time in the ER. HE went on to remove the IV and discharge me out of ER with only half a bag of saline administered.
    What could I do? If I cried I would have strengthened his theory that I was crazy and malingering. I didn't have the energy to argue or the brain power to construct an argument. My carer had to wheel me back to the car in a wheelchair borrowed from ER....I remember the nurse rolling her eyes when I said I'd need a wheelchair to get back to the car.
    A cardiologist that specialised in dysautonomia told me I was somatising...despite diagnosing me with POTS and despite telling me my blood pooling was the worst she had ever seen. She made me see a psychologist who wanted me to take an IQ test (that was going to cost $400), apparently super smart people like to fake illness.
    I declined (I hadn't been able to work for a year at the time, $400 for an IQ test that wasn't going to help me fix my physical health was out of the question) and stopped seeing both of them.
    I've blocked out a lot of the things that have been said and done to me. I think I definitely have some kind of PTSD due to all of this.
    It's not all bad, there have been a few good dr's along the way....but I could count them on one hand.
    Despite the 'good' dr's I've definitely lost faith in our medical system.
    I've accepted that if my illness progresses I can't count on the system to help me. It's a scary place to be.



    ReplyDelete
  6. It's all just so ridiculously absurd. "You feel sick because you're too young/too old, unmarried/married, don't have kids, have kids, do too much/don't do enough."

    I have a feeling some of these doctors who think they have seen so many patients somatizing believe that because they jump to this misdiagnosis and then the patient of course never goes back. So the doctor mistakenly thinks s/he was correct. I wonder if it would make any difference if we wrote letters or sent emails to these dismissive, misdiagnosing doctors after we've gotten correctly diagnosed. Perhaps they would begin to understand they were wrong or maybe they'd dismiss that too. They'd definitely get a flood of letters if all their misdiagnosed patients wrote to them.

    Also, I was looking up Inappropriate Sinus Tachycardia since since I wasn't familiar with it and read an article on palpitations on a site called About Health. http://heartdisease.about.com/cs/arrhythmias/a/palpitations.htm
    This article says it was "Written or reviewed by a board-certified physician." and it talks about testing for arrhythmias and the mistakes doctors commonly make in testing. It then informs people how the testing should be done and if your doctor does not do this correctly, informs patients they "must redirect his or her efforts through gentle reminders, guile, appeals to reason, righteous indignation or whatever it takes."

    Really? Seriously? The onus should be on patients to learn correct arrhythmia testing procedures and then tiptoe around their doctor's fragile ego to cajole him or her into doing the correct procedure? How about try finding a more competent doctor? How about more doctors need to be better educated in the correct procedure? I just can't believe this is the current state of medicine that we are supposed to accept.

    -Jan

    ReplyDelete
  7. I would like to see doctors stick to their own areas of speciality. I do not want a neurologist who, while acknowledging I have physical illnesses, wants to offer up that maybe I am too emotional about it or that I am imagining some things. I see a psychiatrist. To help me deal with the stress of having a chronic, unpredictable illness. He does not offer up any opinions about my physical ailments but he does acknowledge I have a lot to contend with and also disagrees with any of my other specialists that I am in any way somatacizing. I, too, have seen many doctors. And could count the good ones on one hand. It is so depressing. I have to wonder why so many of the doctors I see became doctors? What was their reasons to become doctors? To help people, for the status, for the money? A decision made at the end of high school to enter medicine combined with the ability to pass the exams need to become medical practioners does not mean that they should be medical practioners. Yeah, there are some fantastic doctors. But so many doctors seem to be in it for the wrong reasons. I have been hurt, bewildered, belittled and ignored by members of the medical profession. And dutifully paid for it all when I have settled the account. What is wrong with this picture?

















    ReplyDelete
  8. Hello Michelle and thank you for this (I think! - I do however feel the need for a wee lie-down now just to recuperate from reading all of this! It's enough to make you weep with despair, isn't it?

    Thanks also for including a mention/link here to my Heart Sisters site.

    This is a hugely important issue that pervades all diagnoses and medical specialties. As you mentioned, I too have a particular perverse fascination with the appalling gender gaps seen in research, diagnostics and treatment across the board. I suspect that unless you've been on the receiving end of this laundry list of disrespectful communication examples (as yours were), it might be hard to even imagine real live doctors/nurses speaking this way to adult human beings. Unless of course you're a doctor who suddenly becomes a patient - in which inevitably a giant "EUREKA!" moment occurs and you feel compelled write a book or magazine article about how it really feels to be the powerless schmuck wearing the drafty hospital gown....

    But I have to say that one of my particular favourites - similar to those eye-rolling NZ/Australian examples you cite - is a series of direct quotations from female heart attack survivors I interviewed about actual conversations they'd had with their health care "professionals" (and I use that word charitably). For the sake of clarity, I simply titled it: "Stupid Things That Doctors Say to Heart Patients" - http://myheartsisters.org/2011/01/13/stupid-things-doctors-say-heart-patients/

    ReplyDelete
  9. Even with my POTS diagnosis and a positive Tilt Table Test, and trying to ascertain a root cause for the best and appropriate treatment, I am told all of my symptoms (like heat intolerance) are all in my head. Hence I should really be consulting a psychiatrist and be started on anti-depressants to fix all of my issues. It doesn't help matters that the same medical professional told me that there was no evidence suggesting autoimmune causes of POTS/dysautonomia. I was gobsmacked. And yes, I have one autoimmune disease, and yes I have been told by several other medical professionals that they believe the 2 might be associated.

    I have lost faith in most medical professionals, and am quite traumatized by the consult and associated correspondence. It feels like my honesty and integrity has been shot down in flames. And I seem to have no voice or recourse. Oh how I wish I was 100% healthy and live my life the way I had planned before getting sick. Then I would not have to deal with such unfair judgement and obvious rot.

    ReplyDelete

All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx