Not dying by degrees: illness misconceptions 101

I’ve been unusually quiet on this blog of late, and this time it’s not laziness. No, I’ve been feeling pretty rough, and running lots of tests in order to find out why. My excellent family doctor first examined me for a funny cough and tiredness, worried (since he knows my family history backwards) initially about blood clots and then about a virus. My temperature went on a rollercoaster ride of rising and falling, and initial tests showed disturbed liver function. The obvious choice of diagnosis was Hepatitis A.

Now, it turned out that it wasn’t Hep-A. On that basis I was sent to a specialist who ordered more tests which are now showing suspected (though not confirmed) Glandular Fever (aka mono) and unrelated gallstones. But what I discovered very quickly moving from one diagnosis to the other is how little is understood about either.

The word ‘Hepatitis’ seemed to strike terror into the hearts of many who heard it, at least until it was thoroughly (and repeatedly) explained to them. Never mind that Hep-A is the most common form and one which eventually fully goes away leaving you with lifelong immunity from developing it again. No, the minute the syllable ‘hep’ comes out of your mouth, people respond with abject horror. Now, while it’s not helpful there either I can understand people doing this if it’s HIV, cancer or even Hep-C with its long-term ramifications. But they don’t even listen long enough to understand what A’s all about. Nasty? Yes. Sometimes a bit long-winded? Yes. But not that dangerous or serious in the vast majority of cases.

Even my mother, who’d spent 24 hours reading up on Hep-A, actually cried with relief when the tests came back negative. I began to wonder if I wasn’t taking it seriously enough but, really, I was beginning to feel better and merely expecting to feel a bit slow and under the weather for some more time until it properly cleared up.

Now there’s Glandular Fever (although, as I said, it’s not officially confirmed) to contend with. I came back into work though people are saying to me “but it’s infectious” -mainly not people at work, to their credit. Yes, it is. But I’m not planning to cough on anyone. I said this to a friend only to be greeted by “but that’s not how you get it anyway”. Oh really? Are you a doctor? Cos, actually, despite its common transition by adolescents through snogging, it’s also carried in airborne droplets, making open-mouth sneezes and uncovered coughs a perfectly possible way of catching them. Since I’ve not kissed anyone but my husband for over two years and he’s fine, just what are  you suggesting about me? Or him, for that matter?

People always think that what they’ve heard is the full story. One acquaintance was confused by my symptoms. I don’t have a sore throat and raised glands because in GF older sufferers often just have disturbed hepatology, fever and fatigue. But no-one knows that there’s often a difference between older sufferers – I’m in my late 20s – and teenagers.

My very best friends and most of my family have taken this exactly as seriously as they should – not very, though concerned that I’m feeling under the weather. They know I’ll be knackered for a while, but fine. But it’s the shocked or knowing comments of a few that stick with you and make you wonder how many other people out there who are suffering from far more serious or misunderstood conditions are having to deal with other people’s ‘helpful’ comments right at a time when they’d actually like to feel normal.