Thursday, 2 May 2013

On Being Neurotic (or not)

One of the things about being a young female with multiple troublesome symptoms is that at some point, it is almost inevitable that a medical professional will suggest that there's an element of neurosis.

In the best case scenario, there is incontrovertible evidence of physical disease and/or you find a team who believe your pain and other symptoms, and are prepared to work with you to find solutions.

The worst case scenario (and there is no fiction in this) is that the words 'neurotic' or 'hysterical' attach themselves firmly to your medical record, colouring every decision and every consultation. It's very hard to get an independent opinion on anything if even new doctors have those perjorative words ringing in their ears. If your doctor is convinced that you're the sort of anxious soul that makes mountains out of molehills it can be almost impossible to get any investigations done, let alone appropriate treatment.

Thankfully, although there have been plenty of doctors and nurses who've suggested that I'm 'just anxious', the physical evidence has always been there to convince them otherwise. I remember once as a teenager being wheeled into the A&E department of my local hospital by paramedics, in the middle of a severe asthma attack. The first nurse that we encountered told me very briskly that she couldn't hear a wheeze, and therefore I was probably having a panic attack, and should really pull myself together. Of course, when the doctors came in, they checked my blood gases (a measure of oxygen and carbon dioxide in a sample of arterial blood) and found that my oxygen was critically low and my carbon dioxide was beginning to rise. Both of these are signs of potentially life-threatening asthma. The reason that there was no wheeze to be heard was that there was almost no air moving in or out of my lungs. This is not generally considered a sign of teen angst.

Needless to say, I didn't die from that particular asthma attack (or any of the others that I've had since that time), but it scares me to think that the prejudices of one single person could have had very nasty consequences.

 I have heard many horror stories from other people, particularly those with gastroparesis, which is hard to diagnose without a high index of suspicion. The symptoms, much like a psychiatric eating disorder, can include vomiting after meals, aversion to food (hardly surprising if it always causes pain and/or nausea/vomiting), weight loss, bloating... If a 'diagnosis' of an eating disorder with attention seeking behaviour is made before a gastric emptying study can be performed, the person with gastroparesis may be sentenced to months or even years of inappropriate treatment and suffering before getting a proper diagnosis. Of course I assume that eventually they will succeed in getting a diagnosis and effective treatment. Everyone likes a happy ending.

The suspicion of neuroticism seems to rise in proportion to the number of vague or unexplained symptoms. Therefore syndromes like Ehlers-Danlos, systemic lupus erythematosis, and so many other syndromes or illnesses have a high proportion of people who were diagnosed long after first presenting with symptoms. In some cases this is down to lazy thinking or lack of knowledge. I freely admit that Ehlers-Danlos is rare, and therefore not at the top of the list of differential diagnoses for most doctors, but when a patient presents repeatedly with a host of unexplained symptoms, sometimes there is a link, and sometimes that link is a physical condition that can (and should) be treated.

Of course I understand that doctors do see patients who are neurotic or have health-related anxiety; people who present with mysterious symptoms that don't respond to conventional treatments. My plea to doctors would be to keep the flame of diagnostic curiosity burning, even if it's right at the back of your mind. By all means, encourage people to develop non-medical coping strategies and try to reduce the number of inappropriate investigations or invasive treatments, but keep your mind open, and be prepared to pursue a non-psychiatric diagnosis if the evidence seems to be pointing that way.

"When the facts change, my opinion changes" - John Maynard Keynes

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