Debbie Lose-Kelly says she spends her entire life in avoidance of the everyday chemicals like fragrances, shampoos or laundry detergents. She lives with severe Multiple Chemical Sensitivity — an illness that most in the medical community aren’t convinced is an actual disease.
Nearly every Sunday, Lose-Kelly makes her way to Concord Baptist Church in Jefferson City. Nearly every week, she arrives approximately a half hour before church, sits in the same seat near the front of the worship area and waits for church to start.
“Because that way I beat the crowds coming in, so I don’t have to smell all the fragrances coming into church,” Lose-Kelly said.
She says it took her about 12 years to find Concord Baptist Church. She says the pastor explained to her how the airflow of the worship sanctuary goes from front to back. While the church doesn’t have an official policy, it asks people not to wear fragrances.
“If someone does get on stage and they have fragrances and it starts bothering me, I can make a quick exit to get out of the building,” Lose-Kelly said.
But Lose-Kelly isn’t alone. While many big health agencies don’t track how many people live with MCS, there is a movement. At least three governors from both coasts of the United States have issued proclamations of awareness for MCS. Missouri even issued one in 2011.
Living with MCS
Back in her home, Lose-Kelly told me about life with MCS. First: before I could even come over, she required I not wear any cologne or fragranced deodorant. And, I had to make sure my clothes hadn’t been washed with scented detergent or dryer sheets.
But once I arrived, I noticed the inside of her home smelled almost like the air outside her home.
Lose-Kelly told me how she used to buy a myriad of chemicals to keep her home clean. Now, she cleans using lemons, vinegar, Bon Ami and several steam cleaners.
Lose-Kelly worked as a systems programmer with the State IT services division. But one day at the office in 1999, there was a carpet cleaning solution spill. She says the office filled with chemicals. Lose-Kelly and a few other people got sick and went home. And Lose-Kelly thinks that’s what triggered her MCS.
Now, she says if she’s not careful, she says chemicals can trigger really bad “attacks.” Lose-Kelly says her reactions can be varied: she can get headaches, her ears might turn red. If it’s a severe reaction, her arm might start to shake.
“Slowly, it just seems like I’m starting to lose focus on what’s going on,” Lose-Kelly said. “I’m not paying attention.”
In the past, she’s even lost the ability to walk. Over the course of around 13 years, Lose-Kelly has had four serious reactions. At times, she’s seen her feet turn blue. She says these reactions can be life threatening because at times her airways will close up. One time at work, she walked into a cloud of hairspray. A reaction started. Suddenly, she couldn’t even explain to a manger her problem.
“I was trying to get the word ambulance out, and I couldn’t get it out, so I wrote it,” Lose-Kelly said. “He said ‘you need an ambulance,’ and I said ‘yes,’”
Now, she can’t work, and receives disability payments. She used to see a doctor in St. Louis for MCS, but now, she says she can’t make the drive. The diesel fumes from passing trucks could send her into an attack. Really, she doesn’t go anywhere new.
“You never fully recover,” Lose-Kelly said. “I’ve never been the same since before 1999. I’ve never been the same person, felt the same way, had the same energy, had the same drive and initiative that I did before then. And that part makes me really sad. Because I used to be a really inquisitive person, and I wanted to learn. And that’s just gone now.”
Looking for medical evidence
MCS represents a challenge for doctors: How can you help a patient with a variety of non-specific symptoms with no clear medical cause? Dr. Michael Smith works as the Chief Medical Editor with WebMD.
“I would say the overwhelming majority of doctors and most medical organizations are very skeptical about this being a true physical condition,” Smith said. “Not that it's not a real problem and that patients aren't truly suffering, but we really need to know the cause and have a test to treat it specifically.”
Smith says he believes research suggests MCS awareness is increasing. Still, solid research on MCS has been scarce.
“Multiple chemical sensitivity is an illness with non-specific symptoms that are attributed to an exposure to toxic chemicals,” Smith said. “It's very controversial as you know because there is little solid medical evidence to suggest that this is an actual physical condition.”
He says studies in the past have consistently found psychological issues in MCS patients. Still, some argue living with such a crippling disease while no one believes you’re actually sick could cause people psychological illness.
And to some, that might sound very familiar. Patients with fibromyalgia suffer widespread, chronic pain. Just like MCS, doctors don’t know what causes it.
“For years, doctors just assumed it was a psychological problem, and treated it as such,” Smith said.
Dr. Martin Pall, professor emeritus of biochemistry and basic medical sciences at Washington State University, has studied MCS extensively. Not only does he think MCS can do measurable harm — he thinks it’s related to fibromyalgia.
Pall believes the chemicals people respond negatively to can stimulate a “vicious cycle mechanism.” He says it’s sort of like what happens after you stub your toe. It becomes hypersensitive.
“All of the sudden your toe becomes very sensitive to other kinds of stimulation,” Pall said. “And so, they become very painful. It’s a similar kind of thing where you have chemical exposure, and previous exposure has made parts of your body very sensitive to chemical exposure.”
Now, even Pall says not everyone in the medical field agrees with his research — or even knows about it. Still, testing people for MCS can be difficult, because it can involve exposing them to chemicals that would cause them harm. That raises ethical questions.
“The people who claim it’s psychological, and I’ve argued this in a number of publications, are simply ignoring a vast amount of the evidence that’s been published in the scientific literature,” Pall said.
MCS on the global scene
But European countries are moving to recognize MCS faster than doctors in the United States. In 2011, the Spanish government published a 133 page consensus report on MCS. For the first time, it includes a definition of MCS, and offers criteria for diagnosis.
And, a TV program “Conexión Samanta” featured various people throughout Spain living with MCS. One woman, Elvira Roda, lives in near complete isolation in a beach house in Valencia, Spain.
Meanwhile, many big organizations – like the Centers for Disease Control – don’t actively work with the disease.
But the Social Security Administration has a policy specifically for “Environmental Illness” — one of the many names for MCS. Years ago, Lose-Kelly applied for disability. The first time around didn’t go so well.
“Idiotically, I thought ‘these people are going to believe me, of course I have MCS,’” Lose-Kelly said.At first, she was denied. But on appeal, Lose-Kelly won, and now receives disability payments from the Social Security Administration because of, among other things, her chemical sensitivity. A judge found her claims credible. Testing also showed her “cognitive recognition” had gone down significantly.
“It was substantial enough that it made me cry,” Lose-Kelly said. “You know, when you spent your life in a highly technical field, and then can’t understand it any more and couldn’t properly function in it any more because you just couldn’t remember, it’s really disheartening.”
It’s difficult to say whether MCS is gaining recognition around town. But, Lose-Kelly says in her life, it seems like it’s becoming more common.
But despite all the people she meets that might not understand her illness, Lose-Kelly still has an anchor.
“I lean on God all the time because I know that this too shall pass,” Lose-Kelly said. “I know if I keel over tomorrow from a toxic chemical spill or whatever, I know where I’m going. I feel comfortable in that, so I’m not scared.”