The Need to Transform the Core Values of Medical Care and Health Organizations

The Need to Transform the Core Values of Medical Care and Health Organizations

Shaista Tayabali (Patient, UK) and Carmel M. Martin (Trinity College Dublin, Ireland)
DOI: 10.4018/978-1-4666-1876-3.ch009
OnDemand PDF Download:
No Current Special Offers

Chapter Preview


“It’S Your Lupus.” “It Is Not My Lupus!”

Patient Narrative by Shaista Tayabali

I am awaiting a telephone call. It was booked by my consultant, several weeks ago, as a follow up to a previous phone conversation, both in lieu of actual physical clinical consultations. And both a direct result of a distressing climax to a long year.

I am a woman, 32 years old, born to Indian parents. I was diagnosed with Systemic Lupus Erythematosus when I was 18 years old, following a lengthy stay in hospital on the Infectious Diseases ward. I had returned home to England, precipitously from a trip to India, with high fevers, which rose to 105 degrees; a terse ‘Take Paracetamol’ being the only instruction from the GPs at our local clinic. Days of fever later, my mother was finally advised by a friend to ring emergency services, and the doctor on call did not hesitate to call an ambulance. The rest, as they say, unfortunately, is history; my history.

The year I was diagnosed was 1997. Lupus was not rare in and of itself, but in terms of awareness, both medical and public, I may as well have been the very first case. At the end of a month, buoyed up by penicillin, fluids, and daily blood tests, my diagnosis was confirmed by a cheery ID consultant. He was perfectly charming as an Infectious Diseases man, but his words confirming my future, still haunt me: “You have something called Lupus, but not to worry! You have a very mild form of it. You won’t even notice it. My advice is, go on holiday! Enjoy yourself! Live your life!”

Fourteen years later... he may even have been right. I shall never know, for the path from a diagnosis of SLE involves certain drugs, in particular, immunosuppressive agents and steroids. And each line of treatment has caused a further flare up of the disease, the most debilitating of which has been the impact of methylprednisone on my eyes. The five grams of methylprednisone first injected into me as a direct response to peripheral vasculitis, resulted in steroid induced glaucoma. The immediate failure of my eyes to control ocular pressure led to trabeculectomies on both eyes within two months. I was blessed to come under the aegis of an eminent medical ophthalmologist. His appearance in my life was the result of my acute photophobia, which resembled minor epileptic seizures. He discovered retinal vasculitis in both my eyes, and has been my one constant link at my hospital in the UK. Since 2004, I have also been incredibly fortunate in my glaucoma surgeon, who after careful deliberation performed a rare Molteno tube implant following the failure of my left trabeculectomy bleb.

I take these blessings deeply into account now, when I stand at a crossroads; a crossroads created by the difficulty of having had no such constant link with the rheumatology team. Perhaps it is a measure of the well established faculty for glaucoma and other ocular diseases when compared to prevailing awareness, or lack thereof, for lupus. Perhaps the question is, how long is a patient of long-standing chronic and acute disease, expected to justify the distress caused by a department, based on this single premise: “Well, it’s just your lupus.” “It’s your lupus” has become a standard line of defence alongside the standard first and second line treatments for SLE. As though, once diagnosed, a patient is suddenly expected to contend with an auto-immune illness being normal for them; any new or old symptom that rears its head is proscribed to ‘your lupus’ and therefore nothing to worry about. Nothing for the doctors to worry about, that is; and is it just me, or do all lupus patients react as violently to the possessive pronoun? It. Is. Not. My. Lupus!

Complete Chapter List

Search this Book: