BE SURE TO READ PART 1 IN A SEPARATE HEALTH PAGE
You and your doctors
§ Would you choose a doctor who regularly takes cocaine (or any other behaviour and mind-altering drug)? Avoid doctors who seem to be intoxicated or otherwise unwell, unhappy or disrespectful towards you. Open and clear-minded listening is a skill that your doctor should employ fully.
§ Ask questions! Question everything! There are no stupid questions, only stupid answers. There is no reason why all your reasonable questions should not be answered.
§ Be as clear and straightforward as you can with your GP or primary care provider. Remember, s/he may feel under pressure to assume psychosomatic causes. Help her/him by listing your physical signs and symptoms concisely and in order of chronological appearance. Leave your GP a neat one page printed summary with your name and date on it each time you consult.
§ Don’t talk about how stressed you are, and don’t allow the conversation to wander off in the direction of feelings or your relationships and domestic situation. Be honest at all times, but keep both of you very focused on the key points: your physical signs and symptoms, their evolution, diagnosis and best appropriate treatment.
§ Establish exactly on what basis your doctor is diagnosing. Endeavour to contain your doctors’ answers to the factual and the rational. Your aim is appropriate investigation, accurate diagnosis and effective treatment, not assumptions, judgement and opinion.
§ Ask the diagnosing doctor his/her clinical basis for judging that you have conversion disorder. What psychological trauma are you ‘converting’? What does s/he consider to be your primary and secondary gains?
§ It’s a matter of personal decision, but consider carefully before taking any medication whilst you have no diagnosed disease. Some prescribing is simply speculative and placebo. Some drugs can add to e.g. cognitive problems or stomach complaints. Are you prepared to be a guinea pig?
§ Remember, doctors and healthcare staff are human beings. In the UK’s NHS especially, they are often working under huge hidden pressure of all sorts (e.g. 25% of junior doctors are bullied by their seniors and management bosses; 27% of nursing staff are bullied by their clinical and management bosses. Even consultants are under huge pressure to do what they’re told by their management bosses). So, treat staff as you want to be treated.
§ In the UK’s NHS, you get the consultant you’re given, despite the publicity about ‘patient choice’. It is difficult and uncomfortable to ask to see another specialist unless you pay for private consultations. So, it’s best to start off on the right foot by making your own rules for interaction: clarity, reason, honesty, transparency, scientific method, respect, dignity.
Admin and paperwork
§ Keep copies of everything concerning your condition: notes of GP and specialist consults, all telephone calls (with healthcare administrators and clinicians), a rolling journal of your symptoms.
§ Invest in a small digital voice recorder. Use it in all consultations and conversations. Neurological disorders are notorious for producing cognitive problems. A voice record of what was actually said is invaluable and indispensible. Ask for permission of the other person before you start; if s/he refuses or is reluctant then you have major cause to question why.
§ Obtain copies of all your medical notes, test results and scans immediately they’re done. Patients who ask questions and persist sometimes seem to find that their records go missing as their undiagnosed physical disease progresses. Make sure your records are copied to you. On the other hand, patients who are keeping track of their medical admin are able to spot mistakes and issues far more quickly.
§ When dealing with the NHS or many other big bureaucracies, it’s probably safest to assume that if nothing seems to be happening then nothing IS happening! Be prepared to chase admin staff, doctors, specialists and therapists - and to develop a thick skin.
Support and complaints
§ Plan for the long haul. Most large bureaucracies like insurance companies and the NHS are not known for being responsive once they’ve made up their minds, even in the face of overwhelming evidence that they’re wrong. Battling an unresponsive and seemingly callous system feels very isolating. Never take the system’s attitude personally. In reality, there are many hundreds of thousands of patients in the same position all over the world. Get to know them! Reduce your isolation. Gain and give support.
§ Do not hesitate to go back to your GP for another referral. Don’t hesitate either to ask the Patient and Advice Liaison Service (PALS/UK), external agencies and elected representatives for support in getting the right treatment.
§ Making a complaint is a major step and one that very few people willingly undertake. Sometimes it becomes essential, if not for yourself but for subsequent patients who may suffer the same poor service, negligence or abuse that you have. It’s here that your careful notes, test and scan copies, recordings and journals are invaluable in pinning down clear, straightforward answers and apologies.
§ Be aware that many patients who raise reasonable and justified complaints can find that they encounter resistance (cue: Dr Freud?!) from their healthcare providers, licensing boards and even friends and family. Get help and support from professionals from the outset (there are patient advocacy groups in most cities or counties) as well as online forums.
Research and learning
Nowadays, when older doctors are sometimes still too taciturn and opaque, and busy younger doctors routinely advise patients to ‘go on the web’ for more info (whilst all are, per the dogma, reluctant to encourage a ‘psychologically-troubled’ patient to ‘ruminate’ on ‘non-existent’ disease), Google is definitely our best friend and Wikipedia is our good pal.
In other words, self-education is absolutely essential. Sharing information and support with other patients is not only more than helpful, it’s proven vital to some and a delight for many. Here’s a non-exhaustive list of the online and hard copy resources used in research for this page. None is particularly endorsed except those marked*. Critical analysis is strongly encouraged.
NHS Evidence – Mental Health; resources for clinicians
Psychological.com – Conversion disorder
Scribd – Conversion disorder
WikiDoc – Conversion disorder
Freud and Dora: repressing an oppressed identity, Prof. Michael Billig, Virtual Faculty Project, Department of Psychology, Massey University, New Zealand http://www.massey.ac.nz/~alock/virtual/dora4abs.htm
Lateral medullary syndrome secondary to dissection
Psychosomatics - search term ‘conversion’
Fishbain DA, Goldberg M, Khalil TM, et al: The utility of electromyography biofeedback in the treatment of conversion paralysis. Am J Psychiatry 145:1572-1575, 198k
Ram J: Some observations regarding 905 patients operated upon for protruded lumbar intervertebral disc. Am J Surg97:388-399, 1959
Fishbain DA, Goldberg M, Meagher BR, et al: Male and female chronic pain patients categorized by DSM-3 psychiatric diagnostic criteria. Pain 26:18 1-197, 1986
Rosomoff HL, Fishbain DA, Goldberg M, et al: Physical findings in patients with chronic intractable benign pain of the back or neck. Pain 27 (Supplement 4):5120, 1987
Lazare A: Conversion symptoms. NEng J Med305:745-748, 1981
Richtsmeier AS: Pitfalls in diagnosis of unexplained symptoms. Psychosomatics 25:253-255, 198
Frederick Crews, The Memory Wars: Freud's Legacy in Dispute, New York: NYREV, 1995
New York: Harper Collins, 2006
Jeffrey Masson, Against Therapy, London: Fontana, 1990
Garth Wood, The Myth of Neurosis, London: MacMillan, 1983
Mikkel Borch-Jacobsen, Remembering Anna O: a century of mystification, New York: Routledge, 1996
Richard Appignanaesi & Oscar Zarate, Freud for Beginners, Cambridge: Icon, 1992
*Julia Fox Garrison, Don’t Leave Me This Way – or else when I get back on my feet you’ll be sorry! New York: Harper Collins, 2006
Imaging Repressed Memories in Motor Conversion Disorder - Psychosomatic Medicine 69:202–205 (2007)