Imagine a ferocious mosquito bite and multiply it by 10. Suppose the itch never abates, no matter how hard you scratch. There is no relief on hand and no one knows the cause. Your doctor cannot see anything, and hints that you are imagining it. You wonder if you are going mad, but still you scratch - so hard that you are covered in fingernail marks. You are now a little closer to understanding the nightmare that is undiagnosed scabies.
Last May my husband and I went to Cuba for a late honeymoon. We travelled round the country until one night we arrived in a hotel room which looked more like a prison cell. Wincing, I picked up the candlewick bedspread between two fingers, flinging it as far as possible and praying it would not walk back on its own. Ensconced on an ancient saggy mattress, we entreated morning to come quickly. As dawn broke, we shipped out, never casting that hellhole another thought. Well, not for several months anyway.
Some time after returning home, we started itching. A balmy June meant sleeping with windows wide open, attracting mosquitoes and midges of a rather Mediterranean nature. We put our strange scratching down to their bites and life continued.
But as the bites subsided, the itching persisted. We changed washing powder. No relief. I popped into Boots. "I think I've picked something up in Cuba," I explained. The chemist shook his head at my lack of evidence. "I'm itching just because you're talking about it," he said. "It's psychosomatic". Dolefully I wandered home. Next we called out the council to see if we had bedbugs - but no joy. We were "clean".
My husband was now getting cross. My best friend rang. "It might be scabies." Her cousin had picked it up on a train in Poland, where she had used a blanket belonging to the rail service. My heart both leapt and sank. Relief at having a clue was tempered by the sinister name. I was unaware what scabies was, but it did not sound nice.
Scabies (sarcoptes scabiei) is actually an eight-legged mite, half the size of a pinhead, which burrows under the skin to lay eggs. Reports on how you catch it range from close human contact to infested mattresses and bed linen. There are two types - the most common being "classic", the worst being "crusted". Classic scabies are difficult to detect - tiny red marks which only get worse as you scratch them incessantly. There is talk of tunnel-like burrows but I never saw these. Anyone can catch it, and it doesn't mean you're dirty - really.
My husband, suffering worst, went to his doctor. "Hmm," he said. He doubted it was scabies, but prescribed some rather pungent nit lotion to lather ourselves with. We did, and the itching abated a bit.
By this time friends and colleagues were coming out of the closet. A girlfriend admitted she had picked it up in Majorca from a dirty mattress. Her doctor had cast her a reproving look - and she was horrified to be accused of sleeping around. "It's from sexual contact," he told her firmly. She left in tears. My cousin's boyfriend was completely pooh-poohed by his doctor, but bought himself scabies cream anyway, and the itching stopped.
In July we awoke one morning to find my husband covered in an angry red rash across his torso. Another trip to the surgery and a different doctor. "Hmm," he said, "that's eczema", and prescribed the strongest steroid cream going. I come from an eczema-ridden family, but my husband has never suffered it. So why now? No explanations were offered, only the strongest antihistamines to help him sleep.
The days were bad enough by now, but how we dreaded the nights. In the early hours, the itching started for real. We would stare at one another in desperation, sleep eluding us. If one of us was not itching, we would be kept awake by the other's frantic scratching. We were like a pair of flea-ridden dogs. Unknown to us, scabies come out to play at night, laying their eggs, intensifying the itching. We worried that it was all in our heads.
Reaching the end of my tether, I saw my doctor, at a different practice from my husband's. Unfortunately my cat died the day I went, and I arrived red-eyed and woebegone. I mentioned my cat, then showed her my marked back. "Aha!" she cried, "flea bites!" Despite protestations that I had had cats for 12 years and never once been bitten, she packed me off with nothing but instructions to spray my flat.
I reached desperation point - as did my boss. Sick of my scratching, she sent me to the Hospital of Tropical Medicine. I explained my predicament to the bored receptionist. "Do you have a doctor's letter?" she asked. "My doctor thinks it's fleas," I whispered nervously, "and she won't give me one." Eventually a nurse saw me and explained that I could not see a consultant without a letter. She did, however, have a quick look. "I had scabies once. It was awful," she said. At last, a clue! Although she could not diagnose me, she had inferred it was scabies.
My husband saw a new doctor the next day. Taking one look at him she announced it was scabies. She instructed him to apply the prescribed cream all over, to air the mattress and wash all the bed linen. At last someone was sure what it was. Apparently the eczema was a side-effect of scabies, brought on by the mite.
But even after treatment, the itching persisted for some time - along with our frustration. With a lack of definitive instruction on what to do, we ended up spraying our mattress 20 times, buying waterproof covers, washing every bit of bed linen including duvets, plus all the clothing worn in the past few months. Did we need to be so diligent? No one really seems to know.
An internet search tells us that "Scabies is not a disease of poverty - it affects people of all social, economic and ethnic categories". I was, however, deeply upset by the social implications that scabies appeared to carry. A friend with a new baby rang her health visitor when I was to visit. "Oh no," she said, "don't let her in the house." It seems that both the public and doctors are labouring under all sorts of misinformation, making an already disagreeable infection far worse.
The worst thing for us was the lack of knowledge - and sympathy - displayed by so many doctors. Practically begging for treatment, we were turned away with wrong answers. If the doctors had listened a little, and explained a bit more, we need not have endured the sleepless nights, the rake marks on our bodies, the constant self-diagnosis and the feeling that we were becoming pariahs.
And so finally, a note to all my family and friends out there: it is safe to come round now - honest.
