World Lupus Day 2015

Logo_world lupus dayIt’s that time of year again when I reflect on having lupus, on both how it sucks and how lucky I am compared with many other sufferers. I am aware every day of having lupus, of the effect it has on my life, of the constraints and limits it places on me, but also of the many common lupus symptoms I don’t suffer.

I was diagnosed with systemic lupus erythematosus in 2007 after about a year and a half of tests and investigations into why I was so tired all the time. After diagnosis I realised that there had been other symptoms too that pointed to lupus, but it hadn’t occurred to me they were abnormal. By that I mean things like having cold hands and feet all the time (a sign of poor circulation), dry mouth and eyes, flu-like symptoms such as muscle aches. And there were things I didn’t put together until after diagnosis: exposure to sunlight makes me headachy, dizzy and nauseous far faster than sunstroke would, and strong sunlight brings me out in a rash before it burns me.

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Life wraps metaphors up in little bows

Brain on Fire: My Month of Madness
by Susannah Cahalan

At the start of this year I made a vague promise to myself not to buy any new books or request any advance copies from publishers, and within two weeks I had failed on both counts. The first was a hopeless case anyway, but I really thought I’d manage the second. Until, that is, I read about this book in the Penguin Press Newsletter and absolutely had to read it.

Susannah Cahalan is a reporter for the New York Post, one of those annoyingly talented people who got her break as a journalist before she even left high school, but when she was 24 she suddenly descended into mental health hell. Her symptoms escalate quickly from lack of concentration and paranoia to mania and seizures, to the point where she has to be hospitalised, a time that she cannot actually remember so she has had to piece it together from doctors’ notes, interviews with family and friends, hospital video and her intermittent journal entries.

Cahalan’s journalism training serves her well. She tells her story with a fluid, gripping style, while doing a good job of explaining the medical facts. She comes across as intelligent and likeable, as well as remaining confused by her illness and how it has changed her life. To an extent, you can tell that she is a tabloid journalist, as she is both easy to read and prone to a few too many soap-opera/cliffhanger-style statements, but she doesn’t shy from the more complicated side of trying to understand her illness.

“Sometimes, just when we need them, life wraps metaphors up in little bows for us. When you think all is lost, the things you need the most return unexpectedly.”

It is a frightening story. Cahalan has no history of mental illness and yet is diagnosed in quick succession with bipolar disorder, alcoholic withdrawal, schizoaffective disorder and then psychosis but all attempts to find a medical explanation for her catatonic state initially fail. Her family is desperate to keep her out of the psychiatric ward and it is their tenacity, plus a little luck/good timing that finally gets the ball rolling toward diagnosis, treatment and recovery.

“It had cost $1 million to treat me, a number that boggles the mind. Luckily, at the time I was a full-time employee at the Post, and my insurance covered most of the exorbitant price tag…Unfortunately, there’s often not the same safety net in place for those with lifelong psychiatric conditions.”

I hesitate to compare my health problems with Cahalan’s, obviously our situations are totally different, but there were definitely moments I could empathise with. “I began keeping to-do lists…including insignificant things like ‘walk to town’ or ‘read the papers’ so I could experience the satisfaction of crossing them off.” I do that all the time. I hate to not do something useful every day, but fatigue and brain fog can make that tough. And Cahalan’s final diagnosis is an autoimmune disease, as mine is, so we have both had to figure out how to react to the idea that our own bodies are attacking us. Plus of course an autoimmune disease never really goes away. While Cahalan is currently in complete remission, she will always be waiting for the next flare up, always wondering if a sudden fit of jealousy or deja vu is genuine or a symptom.

It’s a very insightful, moving book. I was a little frustrated by the repetition of the question of whether she was the same person as before. I get that she felt she lost herself for a few months, that people who saw her during that time barely recognised her, and therefore getting her sense of self back was hugely important. But of course it will have changed her. Even if she is 100% medically recovered she has been through a huge experience. She was young, outgoing and driven and then she had breakdowns at work, lost interest in the world, accused her nearest and dearest of horrible things – of course that would change a person, at the very least as a huge knock to the confidence.

But minor quibbles aside this is a well written, brutally honest account of a life that falls apart and has to be painstakingly rebuilt. Plus it’s an important reminder that a person experiencing a manic or psychotic episode isn’t just crazy or even possessed, they’re a human being whose brain is sick, or as Cahalan’s doctor explains it, whose brain is on fire.

Published February 2013 by Penguin Books.

Source: This book was kindly sent to me by the publisher in return for an honest review.