You're only a mouse-click away from an instant diagnosis or a pill on the tongue
By Paul Vallely
18 April 2001
She tried to weep quietly, to avoid waking her husband. But inevitably, eventually, he heard and opened his eyes to see her in bed beside him, in tears. On the bedclothes was her laptop computer. Its modem was connected to the bedside telephone socket. It had started with tingling and numbness in her legs. For months she had searched the Web in an attempt to find out what kind of disease she had. She ended up in a neurological chat room, and came to a devastating conclusion she must have multiple sclerosis. "I was reading what other sufferers had posted there," she says now. "It sounded exactly like what I had. I was sure I was dying."
Indeed, Melissa Woyechowsky was ill. Yet she was not manifesting the early symptoms of MS (exacerbated, she later came to think, by Lou Gehrig's disease and several other self-diagnosed maladies). Rather, she was suffering from something that was already far more advanced. At the age of 30 she was one of the world's first out-of- control cyberchondriacs.
If hypochondria is the excessive fear of illness, then cyberchondria is that fuelled by the huge amount of medical information that is now available on the internet. "I had always had a strong predisposition to hypochondria," she now recalls, from the vantage point of having being virtually cured of the ailment. "My grandmother had this really gross-looking book of symptoms that I used to read. As an adult, I had had numerous Aids tests, even though I knew I wasn't at risk. But the internet was like rocket fuel to my hypochondria.
"For 18 months it took over my life," she says. At her worst, she was spending five hours a day in multiple sclerosis chat rooms. Her heart was beating so rapidly she was afraid to drive. After several months, she didn't want to go out in public. "It just took off to the point where I wasn't functional. I would visit the same sites again and again. I was not collecting facts, I was sharing feelings."
Eventually, the internet afforded a solution. She stumbled across a book called Phantom Illness co-authored by a professor of psychiatry, Brian Fallon, which revealed to her the true nature of her ailment. The kind of doctor that she needed to see, she discovered, was a psychiatrist. Three years on, after hefty doses of therapy and Prozac, she is free of health anxieties "most days". But elsewhere, cyberchondria is strengthening its grip. She is now deluged with e-mails from other sufferers, thanks to the healthanxiety.com website that she has set up to share her cure.
Pornography may be the most popular single subject to be found on the internet, but health concerns run it a close second. There are at least 100,000 sites the most popular of which get more than three million visits a month posted by anyone from medical journals, university libraries, drug companies, agony aunts and self-help groups to outright cranks and crackpots. To the cyberchondriac, they all provide evidence to invest a sinister dimension to everyday symptoms such as an upset stomach, headache, tingling, twitching or other odd sensations. Then headaches are not caused by stress, but by brain tumours. Fatigue comes not from a poor night's sleep, but because of Aids. Joint pains are not the result of over-exertion, but of dengue fever. Even when the rational side of their brain tells them this is illogical, something deeper reasserts the fear.
Melissa Woyechowsky lives in San Diego. Not that that matters to those who contact her. Cyberchondria is an international phenomenon. For her correspondents, www stands for world-wide worries. That much was obvious when Melissa let me peek into her e-mail in-tray, which contains e-mails from across the globe:
CYBER-CASE 1: "Hi, I'm a 31-year-old female going through an 'MS crisis'. It started when I began researching eye floaters on the internet and came across a post from someone who feared they had MS..."
CYBER-CASE 2: "Hi, I need some help. I am only 23 yrs old. I worry about being alone, because I am scared I will have a heart attack or stroke or something else, and there will be no one here to help me!! Does this sound crazy? PLEASE HELP!!"
CYBER-CASE 3: "I am sitting here at work behind my computer trying to not break down from fear. I have just been diagnosed with Panic Disorder of some sort, but my real problem is that I'm afraid that I will die. I'm so afraid all the time that today will be my last, that I am wasting all of the time that I do have on this earth. I have a doctor's appointment on Thursday to look at my leg and I am so afraid. I feel like I'll be dead by then. I was just looking on the internet, scaring the crap out of myself, of pictures of blood clots in the legs and other things..."
What is clear is that the internet is fuelling rather than allaying these morbid fantasies and fears. "You get two types of cyberchondriac," says Dr Julian Eden, a former NHS GP who now runs an e-medicine consulting service called www.e-med.co.uk. "There are those who imagine they are ill when they are not. Then there others who are ill but after trawling the net with their symptoms decide they've got something far more serious than they have so a stress headache becomes a secondary symptom of a pork tapeworm."
"It is a recognisable problem," agrees Dr Paul Cundy, who chairs the British Medical Association's GP information technology sub-committee, which last month issued its first set of guidelines on internet medicine. "Hypochondriacs can be made worse by access to the internet, where there is so much more material available than ever before and a lot of which is seriously wrong." It's been estimated that up to 25 per cent of medical web content is inaccurate or misleading. The trouble is that the internet conveys a spurious authority on material. "You accept things which, if you were told them by a man in a bar, you would dismiss on the grounds that he could be a crazy person," says Melissa Woyechowsky.
There is another problem, too. Many cyberchondriacs are not content with endlessly sharing their symptoms with one another in internet chat rooms. Some don't just self-diagnose, they want to self medicate too. The Web is a potential source not just of information but of drugs as well. You can buy all manner of things direct online.
This worries doctors in two ways. First, it means that their patients can lay their hands on drugs such as the male impotence pill Viagra without going through the screening checks that would be required if they went to see their own GP. Even those who use an e-medicine service such as Dr Eden's would not be prescribed the drug without a comprehensive vetting of their medical history. "It is quite possible for someone with a history of heart disease to get hold of Viagra on the net with potentially fatal consequences," says Dr Eden.
But that is not all. The internet is an unchecked source of legal drugs used for illegal purposes. The new drug of choice among the Hollywood set is Vicodin, known on the street as Vikes. "It's an opiate-based painkiller, which is extremely addictive. Legitimately, it is used for people with terminal cancer where the addictive qualities are not an issue," says Dr Eden. "But you can get hold of it from dodgy Mexican websites. And while you and I might have reservations about giving your credit card number to people engaged in something distinctly dodgy, many people are prepared to do just that."
In Britain, the Government is attempting to control internet drug purchases. Last month, it announced a series of pilot projects to see whether medicines can safely be prescribed on the internet. One of the companies that has been licensed is Pharmacy2u.co.uk, which already has checks in place to spot cyberchondriacs.
"We have a number of them call each week," says Pharmacy2u's Andrew Tucker. "But ironically, online ordering makes them easier to spot than they would be in a high-street chemist on a busy Saturday. Our database records everything we sell. So it shows up people who keep ordering the same thing or who are constantly ordering different things. We won't allow people to stockpile drugs. And there comes a point where we say we won't sell them any more, and tell them to go to their doctor." The Royal Pharmaceutical Society published a revised draft code of ethics for chemists last month ago which for the first time covered online medicine sales.
But there is another dimension to all this. Cyberchondriacs threaten to put new strains on NHS GPs who are already over-stretched to the point where, on average, they can spare only seven minutes per patient for a consultation. Between 4 and 6 per cent of the patients on most doctors register are estimated to be hypochondriacs, according to the psychiatrist Brian Fallon. Now, abetted by the information on the internet, their time-wasting potential is vastly increased. Already doctors are complaining of cases in which they have been tricked into carrying out dozens of tests for non-existent infections, because the patient has memorised the symptoms for some obscure ailment. Worse still, it is part of the condition that, no matter how many tests are done, the cyberchondriac is not satisfied, as Melissa's e-mail in-tray shows:
CYBER-CASE 4: "Hi there, my story is strange. I've seen 2 neurologists, a physician, psychiatrist, psychologist... had scans, blood tests etc. All negative, all say nothing that they know of... Yet even writing this is an effort because the muscles of my head are tightening. sometimes my scalp is so tight it feels as if it will rip open. How do you relax your head?"
CYBER-CASE 5: "Hi. During the past year, I have had a chest x-ray for lung cancer (incidentally, it is very difficult for me to write the 'c' word so I'll just use the abbreviation... hope you don't mind), x-ray for my lower back and stomach, 4 pelvic exams for ovarian 'c', a CT scan on my head. I've seen a neurologist 3 times regarding brain tumour/ Parkinson's/MS and have had several batteries of different tests performed. The tests have all come back negative yet I don't believe my doctors anymore. I hope you can give me some guidance."
CYBER-CASE 6: "My name is Rudy and I have all these abstract pains in my joints (my knees hurt so bad I get convinced I have bone cancer, HIV, other tumours etc). My latest was I was sure I had head lice because my head was so itchy (it turns out I needed to use a different shampoo!). It sounds so funny to say these things... I've seen 25 doctors in the last year..."
So entrenched is the problem that when Professor Paul Salkovskis, the clinical director of the Centre for Anxiety Disorders at the Maudsley hospital, treats such individuals he refuses to test them for the illness they think they have. Instead, he puts them through a series of behavioural experiments designed to provoke in them the realisation that their real problem is in the mind.
For harassed GPs, the problems posed by the internet are more low-grade but no less pressing. "Perhaps 10 to 15 per cent of patients who come into the surgery have looked on the Web before coming," says the BMA's IT expert, Dr Paul Cundy. Some, doctors find, have stopped taking important medications because they learned of a rare complication from a Website. Others come in with five-page print-outs so their GP has to deal with all the things they have not got before coming to what their problem actually is.
Either way, it has dramatic workload implications. "I've had to become quite aggressive," says Dr Cundy. "If they come in with a list I say: 'Well, you've only got 10 minutes, so which is the most important?' and then they have to make another appointment for the rest."
None the less, the BMA's new guidelines acknowledge that internet-informed patients are here to stay. "Increasingly, patients are bringing information to consultations that they have accessed via the internet," says the document drawn up by Dr Cundy's committee. "Doctors should not discourage this practice. If patients present with internet print-outs, it demonstrates that they have taken an active interest in their health and it may be that they spent considerable time finding relevant information. It might be considered as a direct challenge to the traditional role of the doctor as the source of medical information, but the profession must accept that patients will use other means available." In fact, says Dr Cundy, those who have "taken on board a whole load of information which they are not trained to handle, need their GP more than before".
Melissa Woyechowsky's husband a long-suffering man, as she admits has a simple solution to cyberchondria. He recommends amputation of the modem connection. Three years into her cure, Melissa has the good grace to laugh at this but insists it's not the answer. "The internet can help you or hurt you," she says. "The internet was a big part of my problem. It was also a big part of my cure. It can be bad and good." She clicks on another e-mail, which seems to prove the point:
CYBER-CASE 7: "It's 4am and I've been up most of the night with a panic attack. When I saw your website and read it, I cried. Deep in my heart I know I don't have MS, I have other issues that I need to deal with, but am scared..."
Just because you're a cyberchondriac the disembodied cry for help seemed to tell us doesn't mean there isn't something seriously wrong with you.