But a few weeks later, when the exhaustion didn’t recede, O’Leary consulted her general practitioner. He sent her to a specialist, who made a worrisome diagnosis that would prove to be the first of many wrong answers: chronic fatigue syndrome, an illness that is not relieved by rest. Several months later, after she developed joint pain along with the fatigue, doctors decided she had rheumatoid arthritis, a serious inflammatory disorder that can cause joint destruction. The following year, that diagnosis was jettisoned in favor of a severe form of lupus, an autoimmune disease in which the body attacks its own tissues.
But after medications that are the mainstay of treating lupus had no effect — and she developed strange new symptoms — O’Leary’s doctors shifted focus, suggesting that she was also suffering from an underlying psychological disorder. She said she remembers one doctor telling her, “You’re just nervous, honey.”
A dozen years after she got sick, O’Leary stumbled on a possible answer that had nothing to do with her mental health. “I suggested it to doctors — and then they really thought I was crazy,’” she recalled half-jokingly.
It took months to find a specialist who took her suggestion seriously and later confirmed the diagnosis. Although her illness is serious and chronic, the right cocktail of medications, including daily doses of a drug usually used to treat erectile dysfunction, has enabled O’Leary to lead a largely normal life.
For nearly eight difficult years, O’Leary took increasingly large doses of prednisone, a potent corticosteroid that is widely used to battle inflammation. Prednisone often causes insomnia and almost manic bursts of activity — users have been known to feel so energized that they clean their houses in the middle of the night — but it did nothing to relieve O’Leary’s exhaustion. It did dramatically alter her appearance, a common side effect.
Normally thin, O’Leary gained 50 pounds and said she “became the fattest, weirdest-looking person on Earth,” also developing the pronounced “moon face” that characterizes users of high-dose steroids. Once, she said, her own mother, whom she had not seen for several months, did not recognize her.
During brief periods she managed to summon enough energy to finish her dissertation and earn her PhD.
In 1996 O’Leary and her family left Australia for Arizona, where her husband had a teaching job. Based in part on brain scans and other tests, doctors in Sydney had decided she had CNS lupus or CNS vasculitis, a rare and severe form of lupus that attacks the brain and nervous system. But O’Leary also began having odd episodes in which the left side of her body would become weak and she would collapse. Her speech was slightly garbled and her memory was affected.