Sticks and Stones: A response to the New York Times Article, "Ailment Can Steal Youth From the Young"

I tend to shy away from political discussions on this blog.  It's been a very deliberate decision on my part. Privately I have certain political beliefs, and there are issues which are dear to my heart.  But this blog was created as an outlet to process the day-to-day struggles of living with chronic illness.  My own personal therapist in the shape of a keyboard and 'publish post' button.  But of late I have become increasingly frustrated by the portrayal of Dysautonomia in the both the media and peer reviewed medical journals.

A recent article in The New York Times, was heralded as a giant step forward in raising Dysautonomia awareness. A relatively unknown and under recognised disorder, Dysautonomia diagnosis is notoriously difficult, and treatment defined by trial and error. Unfortunately, what began as a great opportunity, has upset many patients. The last few lines in particular,

"Don't let the disease rule you.," Dr. Fischer emphasized. "The messages of how you feel are not reliable. You have to make your mind rule your body".

are as nails on a chalkboard for many of those who live everyday with Dysautonomia.

I will give Dr. Fischer the benefit of the doubt, and believe that his overall intention was to suggest we try to participate in life as much as possible. A course of action known to promote mental health and improve coping mechanisms. Managing stress is important, particularly when your autonomic nervous system (ANS) is already malfunctioning, as it is known that increased stress equals increased symptom severity. But the idea of the mind ruling the body, in a physical disease, simply perpetuates the myth that a) Dysautonomia has a strong psychological component and b) that all we need is a positive attitude. Can I control my blood pressure and heart rate by simply willing it? No. Though I, like many other patients, truly wish I could. But the question arises, would Dr. Fischer say the say such a thing to a person with diabetes or Parkinson's disease? I think not.

This comment comes on top of The Grinch Syndrome controversy, following a publication by prominent researcher, Dr Levine. Dr Levine concluded that all cases of Postural Orthostatic Tachycardia syndrome (POTS, a common form of Dysautonomia) were due to deconditioning and small heart size. His solution, all patients need to follow his exercise program. Those who didn't recover simply didn't exercise enough. All accompanied by the proclamation that he had found a 'Cure'. Whilst the methodological failings of the study, including its overreaching conclusions, are well known, this study persists thanks to Dr Levine's prominent reputation in the field, including his work with NASA. Unfortunately, this study is quoted by many well meaning medical professionals, despite many patients being highly physically active prior to illness and continuing to have normal heart size, long after diagnosis. (This is not negating that exercise is a vital part of the overall treatment of Dysautonomia. But it is not a 'cure' for all, and must be tailored to each individual patient).

It would seem that these practitioners, despite their best intentions, have lost sight of the patients they are supposed to be treating. Naming a disorder after a Dr Seuss character is not cute, it is patronising. Not only that, but this research negates the fact that there are multiple well-recognised forms of POTS and Dysautonomia, all of which have different underlying pathologies. There is not a one sized-fits all diagnosis, or treatment.

Whilst the physiological symptoms of Dysautonomia are difficult to live with, it is the way these impact on a patient's day-to-day life that can be most challenging. Many patients have had, and continue to have, a difficult and demoralising experience. Patients are told that much of what they are experiencing is psychological in nature and continuing illness reflects low motivation. This can be devastating.

Both of these doctors know the stigma attached to Dysautonomia. Many patients have fought for years to finally find the correct diagnosis. During that time they have been told "that it's all in your head", "it's anxiety", or "it's depression". There are helpful comments from family and friends, and not a few medical practitioners, that we "simply need to get out more", "be positive", "exercise", "eat healthy", the list goes on and on. These experiences leave a mark on those who have been through them. For many patients these remarks persist long after diagnosis.

Dismissal and disbelief are part and parcel of Dysautonomia. Heard frequently enough, patients begin to internalise those feelings, even when they know the truth. Patients frequently experience an overwhelming pressure to prove their illness, both to those in their life, and medical professionals. As such, the outrage of patients when comments such as this are published, is understandable.

I know from personal experience, that there are many doctors who are quick to dismiss when they are unable to find a cause for reported symptoms. After describing my symptoms to one General Physician, I was told, “when a woman your age presents with these symptoms it is always in her head”. Thankfully, with a background in Neuropsychology, I knew he had not followed any accepted testing methodology and therefore drew erroneous conclusions. Notwithstanding, I was left deeply upset. That distress turned to anger which spurred me to search further and finally find a doctor who could provide me with a diagnosis that fit the symptoms, and push for appropriate treatments. But I often wonder how many patients simply accept such a diagnosis and blame themselves when they don't get better.

I can push myself to make an appointment in the city, 45 minutes away. But not without extensive planning and preparation. By the time I am home I am exhausted and highly symptomatic. Quality of life becomes a moot point. Life is defined by periods of increased symptomatology punctuated by pushing yourself beyond your limits for a certain event. This hardly reflects an effective treatment option.

Social outings and participation, are vital to mental well-being. It is easy to become so overwhelmed by illness that we catastrophise, and believe we are unable to do anything. Simply leaving the house and all the potential situations that may occur (eg, fainting or vomiting in public) becomes an occasion for increased anxiety. Few patients would deny this. However, in reality a simple outing, for example, going to a cafe, can lead to an exacerbation of symptoms post-event. For many patients, this in turn leads to a lengthy recovery period often measured in days, and for some, weeks.

In psychology there is a phenomenon known as the Primacy and Recency Effect. This theory tells us that people recall the first and last things they are told, with the intervening information recalled with less clarity (regardless of how informative it may be). In the case of this article, most would take away that the patient discussed was very ill, but the fundamental answer to treatment is related to attitude. Which only serves to perpetuate the myth of a psychiatric aetiology. We are also drawn to personally salient information. For patients who have struggled for recognition this conclusion sums up the struggle they have faced, and for many, continue to face. For those who doubt the legitimacy of the disorder, it confirms their pre-existing opinions. Especially coming from an expert in the field.

I am sure that Dr Fischer did not intend to cause harm or distress by his statements. And it may be a question of simply how the journalist chose to frame the discussion. But it behoves medical professionals to stop simplifying complex disorders. Especially, when most will admit that little is known about the mechanisms of the disorder and the ANS as a whole. Additionally, this article only addresses POTS in an adolescent, with a specific identifiable aetiology. Even less is known about those in the older age groups. Questions of treatment, recovery or prognosis are often left unanswered as little to no data exists.

Patients are vulnerable and frequently unable to advocate for themselves. As such we rely on those who are supposed to provide us care, to advocate on our behalf. And that includes thinking about the potential impact of the language they use both in the public domain and medical journals.

Sadly, whilst much of this article is informative and aides in increasing awareness, this comment from a prominent specialist in the field merely serves to perpetuate unhelpful myths. Dysautonomia is a highly complex disorder, varying in aetiology, treatment, severity and impact on functioning. It has clear, measurable physiological and pathological markers. Its impact on patients and their families can be devastating. We need an advocate, not minimisation and simplification. And "make your mind rule your body" does not fulfil that brief. The medical covenant of "First do no harm", is thought a central tenant of medical practise. It is time to apply this practice not only in the treatment of patients in the doctors' rooms, but also the way disorders are discussed in the media.

Michelle

Update: a revised copy of this post was was accepted and published in ABC Ramp Up and arm of the ABC News Network, on 21 Nov 2011.