We need to talk about … unusual allergies

One year ago today I self-published a book called Living with Methylisothiazolinone Allergy.

Methylisothiazolinone, or MI for short, is a preservative used in cosmetics, detergents and ancillary cleaning products, and in other liquid products you have around the home, such as glue.

There are ‘sibling’ preservatives to MI — such as MCI (methylchloroisothiazolinone) and BIT (benzisothiazolinone) — and one or more are probably in your washing-up liquid, probably in your laundry detergent, and almost 100% certainly in the paints on your walls. And you’re likely to be unaffected by it all. 

But 1.5% of the population is affected by it — with symptoms ranging from rashes, inflammation and broken skin — and many remain undiagnosed. Around 10% of those with eczema may be among them, and patch testing can identify the triggers.

Anniversary aside, I’ve been reflecting on MI lately because sales of the book have been healthy enough for me to proceed with a Spanish version. I’ve hired a translator, Marta, to work on the text, which I’ve been tailoring for the Spanish and Latin American markets, and as part of my research have been exchanging emails with people in Spain, Mexico and Chile, about the struggles they face locally with this allergy. Before I wrote the book I found there was little information in the UK and US, but the problem is more dire elsewhere — and few nations have web-based resources or charities to support them.

It strikes me that we are so inundated with talk about gluten, and gluten-free products, and more lately, about veganism, and vegan products, that it’s too easy to forget that there are people out there, indeed more than who have coeliac disease or are vegan, who struggle for the information that they need to get through the day without a reaction that can set them back weeks. 

And I contribute to that wave myself. I use social media to share news of relevance to those with gluten-related disorders and who are vegan, as I do for those with food allergies — and I’ll continue to do so. But as I mull I’m reminded that there are less fashionable triggers and ‘free from’ requirements that deserve their moments of awareness-raising too.

There are lots of allergens to ingredients in non-food products — be they preservatives, or fragrances, or other components you may not have heard of. Look at the Allergen of the Year list for the last few decades. How many do you recognise? Much of the struggle is that awareness is poor, the chemical ingredients on products can be impenetrable to non-chemists, and household products aren’t always required to declare them explicitly anyway.

 

The power of a book

A book, for me as a writer, was the obvious means to get reliable info and advice out about MI, but no conventional publisher would have looked twice at the idea, so I had to go it alone and take the risk. I know from experience in trying to place a now-abandoned idea for a book about latex allergy that niche allergies aren’t considered money-makers.

My colleague and friend Michelle Berriedale-Johnson, through her niche enterprise Curlew Books, has published a hugely successful title on histamine sensitivity — which I reviewed here — which reiterates the point that people with unusual sensitivities are information-starved and need guidance under one ‘roof’.

Feedback from my MI allergy readers has thrown up one unusual and pleasing recurring theme. Several have told me that the mere existence of a book has validated them and their condition, especially in the face of unsympathetic family, friends and colleagues. More than one has said they have loaned the book to eye-rolling acquaintances in order to challenge scepticism. 

But my concern is that it’s not going to get easier for people with rare or little-known allergies unless we highlight them more. In fact, I expect in some ways for things to get harder. I will write about the depressing crackdown on ‘free from’ labelling in cosmetics another day, but for now I ask you to bear in mind it’s not merely about gluten, or veganism, or even about nuts, or milk, or even pollen, or pets, or dust mites.

It’s sometimes about chemicals with weird names used in tiny amounts, ubiquitously, that can make people’s lives a misery for days when they walk into a recently painted room, or a disinfected public restroom, or sit alongside a perfume-wearing fellow commuter.

And we need to talk more about them.

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