‘Kay’ doesn’t feel comfortable revealing her real name.
She’s in her 50s and reads this column in the Pekin Daily Times (Illinois). In 2006, a specialist diagnosed her with ‘idiopathic environmental intolerance,’ also called multiple chemical sensitivity syndrome (MCSS).
The National Institute of Environmental Health Science website defines MCSS as a “chronic, recurring disease caused by a person’s inability to tolerate an environmental chemical or class of foreign chemicals.”
‘The symptoms started eight years ago,’ said Kay in a telephone interview. ‘I had a rapid heartbeat, my throat would swell and get very sore, my eyes would blur and burn, and my ears would throb and plug up like an ear infection.’
Her family physician, recognizing the problem, sent a note to her employer requesting that Kay’s co-workers cease wearing perfume. Many of her co-workers thought the request was ‘funny and odd,’ and some ignored it. Eventually, Kay had to leave her job.
At another job, after a co-worker purposely sprayed perfume near her, Kay’s husband had to take her to the hospital. Kay hasn’t worked full-time in two years.
And recently? ‘I’ve had two chemical exposures from a lawn company applying chemicals next door,’ she said. ‘I’d been fighting them for two years to comply with Illinois law to give me 24-hour notice. But they wouldn’t. They’d give notice literally while they were spraying the lawn.’ After the first spraying, Kay had to be treated for chemical exposure at the hospital.
The second time, though giving a 24-hour notice, the company applied their lawn chemicals on a windy day against Kay’s wishes. She quickly had to use an ‘EpiPen’ and dial 911 for the life squad.
She also experiences symptoms near dryer sheets and certain furniture materials.
One challenge has been having to deal with people saying it’s all in her mind. ‘People take it personally when you say it bothers you,’ she said. ‘I don’t want them to take it personally; I just want them to understand.’
Another challenge has been the perfume nurses wear at the hospital. As an advocate, she has talked successfully with a local hospital executive to address the life and death seriousness of MCSS for some people.
She said, ‘Some people (like the executive) are open-minded and listen, while others look at you kind of creepy. They don’t realize how sick you can get.’