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Good news in light of the whole hypochondria thing, they’ve found a gene for MND/ALS.

In his essay, The Median Isn’t the Message, Stephen Jay Gould recalled that when he was first diagnosed with abdominal mesothelioma, a rare form of cancer, his consultant suggested that maybe he shouldn’t read too much about his condition. Gould, of course, ignored the advice, and headed straight for Harvard’s medical library. He soon discovered why ignorance can be bliss; his illness was incurable and the median mortality after diagnosis was only eight months. Happily, Gould beat the odds, and survived his mesothelioma, but not before he had terrified himself (though he has since died of an unrelated cancer).

Ivan Noble

This happened more than twenty years ago. Nowadays it doesn’t require a trip to the library to scare yourself witless; just a few mouse clicks will do it. Ivan Noble, who recently died of brain cancer, documented his two year struggle with the disease on the BBC Online website. His third entry, titled ‘Net Terrors’, written shortly after his diagnosis, tells how he was browsing the internet at four one morning, when he came across a site where a patient with the same tumour had asked a doctor how many people with their condition were still alive three years after diagnosis. The reply was ‘none’. Noble, quite sensibly, decided that, for a while at least, he was going to stay clear of medical web sites.

However, there is one group of people who cannot stay clear of such sites. They are the internet hypochondriacs; or, as they have been called, the cyberchondriacs. In the past, hypochondriacs would scour medical dictionaries and the like in order to track symptoms and self-diagnose; now they interrogate search engines and visit online forums. It’s a growing problem. An American study in 2003, found that eighty percent of adult internet users had at some time used the net to research illness related subjects; and some six percent use it for that reason everyday. According to Dr Trefor Roscoe, a GP and computer specialist, doctors are now being inundated by patients with cyberchondria or ‘internet printout syndrome’, as it is also called.

Of course, there is nothing new about hypochondria; the syndrome has been recognised since the days of the Roman physician Galen. But the problem with the internet is that it meets and fuels the hypochondriac’s obsessive need for health-related information in a way which no other medium has managed. Brian Fallon, the co-author of Phantom Illness: Recognizing, Understanding and Overcoming Hypochondria, is in no doubt that in this regard the internet has made things worse for the person suffering health anxiety.

The trouble is compounded by the fact that the information on the internet is unregulated. This is the perennial problem for anybody who uses the internet for the purposes of research. Information is frequently deprived of the authority which makes it reliable. Therefore, if you’re suspicious that the tingling in your limbs means that you have multiple sclerosis, it is a certainty that in time you’ll find someone on a health forum willing to confirm your suspicions; or, if you’re feeling tired, and suspect that it might be the sign of some serious illness, it won’t be long before somebody suggests that you have lupus or some other weird autoimmune disease.

Fallon advises his patients to stay clear of the internet: ‘In a loose sense, a hypochondriac becomes almost addicted to looking up information, examining himself, and getting reassurance from other people. Checking just makes things worse.’ Ivan Noble also struck a cautionary note:

It is wonderful that so much information is available and that patients can be as well informed as they want to be. But it is very difficult to filter that information. It is not possible to start to search the net and hope to see only encouraging news. Along with the details of therapies, diets and clinical trials, there is cold, clinical information out there about how many people die and how they die. Link leads to link and it is easy to terrify oneself like I did.

Hypochondriacs beware, then; the internet can seriously damage your mental health.

Related Post: I’m an internet hypochondriac.

I’ve been a hypochondriac for nearly the whole of my embarrassingly healthy life. Its start was my grandmother’s fault. She owned a medical encyclopaedia. Admittedly, it had been published in 1903, but I figured that as long as I didn’t read the dropsy entry, or have an illness requiring antibiotics, then I was probably on pretty safe ground relying upon it for pertinent medical information. So aged seven I confidently diagnosed myself with Bright’s disease. I can’t quite remember why –  something to do with my kidneys, I think. Anyhow, I can happily report that I survived this early setback.

In fact, my hypochondria went into remission for most of my teenage years. I did have multiple sclerosis briefly one morning, but it turned out to be no more than pins and needles caused by spending the night lying fast asleep on one arm. And then there was glandular fever, but since I really did have that, it doesn’t quite count. Mind you, my self-diagnosis of leukaemia proved to be somewhat wide of the mark.

Unfortunately, this period of relative calm came to an end with a dieting fiasco in my early twenties. I had been getting a bit podgy – too many cakes, rather than liver disease – so I thought a diet was in order. It went well. I lost four pounds in ten days. Very encouraging, except I promptly convinced myself that weight loss meant stomach cancer, and contrived to stuff myself silly over the next week just to prove that I could put the weight back on again. I could. In spades.

This kind of madness has continued off and on for the last twenty years. But recently it has taken a disturbing new turn. For I have discovered that the internet is the hypochondriac’s best nightmare. It all started with a game of squash, heat exhaustion and a doctor’s visit.

“You’ve overheated,” said the doc, obviously noting my fevered brow.

“Why’s that then?” said I, forgetting that I had just played squash in one hundred degree heat.

“It’s a hot day,” somebody said, rather contemptuously I felt.

And if only things had been left there. But, oh no, the doctor just had to pipe up with, “Well, almost certainly that’s it, though there are some very rare conditions which can cause overheating. But there’s no need to worry about them, and I’m not going to tell you about them anyway, because it’ll only frighten you.”

Well what the hell did he mean by that!? I just had to find out. And that’s when it occurred to me, use Google! So I typed in “hot flushes”. Menopause, it replied. I contemplated this possibility for perhaps somewhat longer than a man in his early forties ought to, but even I couldn’t quite believe that I was going through the change. So what else might it be? Tamoxifen? Nope. A tumour on the thyroid gland? Ah, that was more like it, but they’re usually benign, so not too scary. And then I saw the words guaranteed to precipitate a hot flush in any self-respecting hypochondriac. Pancreatic cancer.

Pancreatic cancer is not an illness which tends to have a happy outcome. So, needless to say, I immediately became convinced that I was suffering from it. But what to do? I was much too scared to do further research on the net. And anyway what was the point in finding out how much time I didn’t have left? And then I hit upon a harebrained scheme. People with fast acting terminal illnesses must notice physical decline pretty quickly. So why not set myself a daily physical test – like 2000 metres on a rowing machine – to see whether I got any worse at it? If in a month I hadn’t, then I was probably home clear.

This wasn’t a very clever plan. Its major flaw became apparent some seven minutes after I had embarked on it. Lying panting on the floor in a pool of sweat next to the rowing machine, I realised with horror that I was going to have to repeat the whole process again, just as quickly, the next day. And then the one after that, and so on for a month. At that rate, more than likely I’d expire with a coronary long before my pancreas shuffled off its mortal coil. But did I let this thought stop me? Not a bit of it. The next morning found me astride the rowing machine, eyes bulging with effort, or possibly hyperthyroidism, desperately chasing the clock. Could I match yesterday’s effort? I’m sorry to report that I could not. The clock worsted me by a clear two seconds. Not a huge amount, admittedly, but an obvious indication that my physical decline had begun.

It occurred to me that maybe I ought to call the doctor’s surgery immediately to inform them of my imminent demise. I wasn’t sure they’d be particularly interested, but I figured at the very least that I ought to cancel my flu jab appointment. I could also update them on a new, rather irritating, symptom that had appeared over the preceding few days.

Twitching. Nope, not some strange desire to sit in a field hoping to catch a glimpse of a stray pigeon, though that would have been bad enough, but rather muscles that twitched. A lot. In fact, rather as if a family of hyperactive moles had taken up residence in my limbs. This was not good for my already frazzled state of mind, since it was turning out to be rather difficult to sleep with Moley and his pals skipping the light fantastick in my calves every night.

In normal circumstances, new symptoms are the lifeblood of a hypochondriac’s obsession. There are, after all, few pleasures in life to match the sweet terror of flicking through Gray’s Anatomy to determine whether the pain you’ve just noticed in your knee is a sign that a vital organ is about to give up the ghost. However, on this occasion, I was not overly worried. It was just muscle twitching, which compared to pancreatic cancer surely could not be too serious. So why not Google it? At least that way I could present my doctor with the bundle of research that he always so appreciates when I want him to confirm a particular diagnosis.

Google unfortunately did not share my optimism about muscle twitching. Admittedly, there was mention of anxiety, caffeine and too much exercise – none of which I took to be particularly life-threatening; and I was fairly certain that something called benign fasciculation syndrome was going to be…well, benign. But none of this compensated for the horror of seeing page after page pop up on motor neuron disease, or ALS as I soon learnt it is called in North America. This really was not the best news. It was unfortunate enough to be suffering from one terminal illness, but to be suffering from two, especially when the second one involves a relentless decline into total paralysis, seemed really to be taking the biscuit.

I’d like to say that I contemplated my fate with equanimity – that I cut a rather noble figure as I calmly reminded loved ones of Epicurus’s maxim that ‘Death is nothing to us’. But the truth is my reaction to this new development was more Woody Allen than Epicurus. I became morbidly obsessed with the twitching of my muscles. I would think nothing of spending whole afternoons staring in horrified fascination at the subcutaneous bubbling my calf muscles in particular seemed determined to torment me with; and the merest suspicion that a previously twitch-free zone had decided to join in with the fun would be enough to provoke copious wailing and desperate entreaties for medical intervention.

I am pleased to report, though, that I retained a semblance of the scientific spirit in the series of strength tests I devised to determine just how quickly I was growing weaker. These included: standing on one leg (personal record – 5 minutes 32 seconds); standing on tiptoes on one leg (1 min 15 seconds); standing on tiptoes on one leg in the dark holding a cup of tea (4 seconds); hopping upstairs carrying a large cat (23 stairs). It is true that these tests did not show any dramatic decline in my physical prowess – in fact, if anything I got better at them as time went on – but I was not reassured. No doubt I had a variant of motor neuron disease that would taunt me with the possibility of remission, or even a cure, only to accelerate wildly the moment I began to think that just perhaps I’d be okay.

Obviously, suffering from two terminal illnesses – though, oddly enough, by this stage I wasn’t spending much time thinking about the pancreatic cancer – it was necessary to inform family and friends that I wasn’t going to be around for much longer. It was with a heavy heart, then, that I broke the news to my parents that their beloved son was unlikely to see out the year. It has to be said that their reaction to this bombshell was somewhat underwhelming. My father barely glanced up from the Daily Telegraph, and my mother muttered something about remembering to cancel the television license. Clearly they hadn’t understood what I was telling them. So I explained about my pancreas, and about the twitching, and how all this was terribly bad.

“Oh yes, that twitching, your father has that, and he’s still alive, more or less,” said my mother.

This was unexpected news.

“Show him your calf muscles, dear!”

My father knows better than to ignore a direct command from my mother, so he obliged by rolling up his trousers. It took a little while for me to pluck up the courage to look at his unadorned lower legs, but when I did, I was stunned to see that his calf muscles twitched every bit as wildly as my own.

This was a staggering revelation. It just seemed impossible – such a coincidence! I gave him what I hoped was a look of immense compassion, and then broke the news that he too was suffering from motor neuron disease.

“Oh well,” said my mother,“could be worse, he could have pancreatic cancer as well.”