As her anxiety built over the years, Katie finally ended up where many self-diagnosers turn first: the Internet. It's where she stumbled over the word hypochondria: "I found the term through Google searches, and it applied to me.”
Hypochondria, defined as abnormal, often obsessive anxiety about one's health, can be an isolating experience. By definition, it’s an illogical state of mind, one that can confuse and shame sufferers. Caught between what seems deadly and what most often isn’t, they can remain scared and isolated.
With my own history of medical anxiety, hypochondria is an issue very close to my heart — as well as spleen, lungs and lymph nodes.
For a year and a half, I grappled with hypochondria firsthand, obsessing and panicking over the overwhelming sense of terror that circled within me. I cancelled plans because I was sure a freckle portended skin cancer, gasped at phantom pains and Googled symptoms until I found diseases to fixate on.
Nothing could stop it, least of all doctors. The sickness existed deep where facts couldn't reach it. Irrational or not, hypochondria reduced me to a shadow of myself. For a period of 18 months, it was more real than I was.
“You feel really alone in it,” said Katie, who, like the other people quoted here, asked to be identified only by a first name. "At first, I wouldn’t recognize any of it as hypochondria; I’d believed in it fully. But even when you know yourself, you still have all these feelings. I couldn’t turn it off.”
While keeping her concerns within a small medical circle, Katie tried to manage her hypochondria herself. But seeing a doctor for every suspected problem was costly, inconvenient and ultimately ineffective. Facts and reassurance were temporary; the flow of worry never abated.
“People don’t assume the validity of how you feel. Other people don’t take it seriously. But emotionally, it’s heavy. It’s very real," she said.
Even the most informed individual can be vulnerable.
“I go from zero to terminal faster than any normal person should be able to,” said Siddhi, 34. A former medical student, she once mistook dry skin for a rare form of breast cancer and flew home from the Caribbean in a panic. She switched shortly after that to a career in fashion for self-preservation.
Siddhi feels her medical background is a double-edged sword. On the upside, her doctors "know I'm not pulling things out of thin air." But the downside is that “they've gotten so used to me that sometimes they don't take me seriously.”
Actual data on hypochondria are murky. A 2005 medical book on somatoform disorders identified eight studies that pegged the rate of hypochondria at between 2.2 percent and 9.6 percent of patients, and noted that women, the elderly and lower-income individuals are at more risk. Yet it also warned that “the prevalence of hypochondria in the general population has not been established.”
This leads to a discomforting truth: Despite advances in medical science, hypochondria remains poorly understood, uniquely experienced and rarely discussed even as it tests the sanity of sufferers and the sympathy of their friends. A trigger can be a line in a book, a passing comment, even a tweet — and then the worry spirals. And while cognitive-behavioral therapy and even medication can be effective for some, many others don't seek help because of the ingrained fears or stigma.
“I figured out I was gay in middle school,” said Andrew, 24, a public relations manager in San Francisco. “And all the media at that time, the public sentiment meant, if you’re gay there’s a strong likelihood you’ll get HIV or AIDS. I thought that it was a death sentence — not HIV, not sex, just to be gay.”
His worry became extreme as the years progressed.
“My brain was so fixated on getting sick," Andrew said. "HIV would cross my mind when I’d high-five people, or touch railways at the subway, or when opening a door to a McDonalds.”
After removing himself from friends and social life — “potential contaminants,” as he called them — he finally opened up.
“My friends were shocked at how afraid I was. They didn’t know," Andrew recalled. "It reduced my appetite, my focus, anxiety; it affected my physical health. It took me a long time to figure out I didn’t have a problem with HIV. I had a problem with hypochondria.”
Today, that problem has lessened. Andrew remains healthy: Now, however, even he believes it.
“It's better to talk about it with people than sit alone,” he said. “It’s easier said than done, but it was important for me to get out of my inner world and live my life in spite of the fear. Once I started doing that, I already felt less sick.”
The irony? Andrew was the first person to whom I disclosed my own hypochondria, when I was in its tightest grasp, all without knowing what he’d been through himself. When I was in and out of doctors' offices, fluctuating between anxiety and outright alarm, Andrew was there for me, reminding me, if nothing else, that I wasn’t alone.
I’m writing this article in the hopes I can help a reader like he helped me.
Hypochondria may be strong, but camaraderie is contagious.