Living with a Chemical Illness at UCLA

By Grace Stevenson

Have you ever felt nauseous after someone lit a scented candle in their apartment? Or maybe you walked around Macy’s and developed an immediate headache from the plethora of perfumes that are spritzed at you as you innocently tried to go about your holiday shopping. Approximately 12-15% of the US population experience multiple chemical sensitivity (MCS), which is an illness associated with triggers in the environment such as smoke, perfume, cleaning supplies, and chlorine, to name just a few (Caress & Steinemann, 2004). Symptoms of MCS can vary widely from headaches and nausea to trouble breathing and changes in heart rate (Martin, 2017).

Despite patients with MCS presenting with very real symptoms, the causes of these symptoms are often contested. Health experts are divided on whether MCS should be recognized as an illness, and currently, the American Medical Association does not classify MCS as an illness (Martin, 2017). This can make living with MCS increasingly difficult as patients are not treated with the same validation and support from the public and medical community as patients with more commonly diagnosed illnesses.

I am currently an undergraduate research assistant at the Center for the Study of Woman at UCLA, where we are in the process of collecting oral histories from women struggling with chemical sensitivities. Megan, a third-year student, has experienced first hand the challenges and lack of understanding that accompany chemical illnesses.

Megan grew up about 20 minutes outside of Seattle. When she was sixteen, she walked into her high school and noticed something wasn’t quite right. She almost immediately had a headache and was struggling to stay awake during class. Her symptoms became so severe that she ended up teaching herself from home for many weeks at a time in order to avoid the environment.

When asked why she first realized she had a chemical illness, Megan noted that she was being treated for Lyme disease, but she knew that at least part of these symptoms she was experiencing were related to chemicals. She explains how, “I would hide in my room when my mom would spray her perfume to wait for it to dissipate. I worked with my family to switch to all natural soaps, detergents, and cleaning products to take the toxin load off of all of us, but I couldn’t wear my clothes without reacting, and my blood was filled with chemicals.”

Despite Megan’s chemical sensitivity and broader disease paradigm (which caused her to take a year of college), she makes every effort not to be defined by her illness. She does not tell her professors, unless relevant to a paper or discussion assignment, and she has not told her current roomates specific details about her environmental illness. “I don’t expect them to base their routines off of my needs, and I don’t want to impose on them.” While Megan abstains from disclosing information to others, the symptoms that accompany MCS have greatly impacted her time at UCLA. When asked if chemicals in the classroom affect her, she responded, “Absolutely. It’s difficult to concentrate and my muscles and joints ache. Taking both the sensitivities and infections into account, I had to get glasses that specifically ease the strain on my eyes and on my brain. Due to the brain damage, it’s difficult for my mind to make connections that used to happen quickly and without a second thought. I get angry and combative even if there’s nothing that would typically be setting me off. I don’t ever tend to get angry without a chemical trigger.”

UCLA’s Center for Accessible Education provides accommodations for a variety of disabilities and illnesses, but students with MCS have limited options available. Megan had to take on the role of self-advocate. Her experience of illness and chemical sensitivity propels her passions and work. She plans to one day become an international human rights lawyer, and eventually President of the United States in part to deal with the current state of the healthcare system.

The question becomes, what can we do as students and faculty at UCLA to help out members of our community like Megan who experience MCS? One approach is eliminating fragrances from the workplace. Many classrooms and work environments are asking students and employees to refrain from wearing scented products as much as possible. Megan is strongly in favor of this approach but recognizes the challenges. She describes how “scent is bound up with cultural constructions around hygiene, cleanliness, and attractiveness” which is why people feel the need to mask bodily odors with deodorants and perfumes. Megan pushed back on this narrative by explaining that “we don’t need to smell like a certain plant or smell “sexy” as an element of our self worth. Public spaces in particular do not need to be open to fragrance. It’s better for everyone’s health – even if someone doesn’t believe they are acutely experiencing immediate effects of chemicals. I guarantee they are only harming one’s short term and long term well-being.”

Megan is currently working as an undergraduate researcher for the Center for the Study of Woman’s project, “Chemical Entanglements”. She hopes to bring together diverse voices and perspectives from academics to patients so that the broader community will take notice and make changes for those living with MCS.

Grace Stevenson is a UCLA Undergraduate Student studying Psychobiology. She is a member of the 2018-2019 Chemical Entanglements Undergraduate Student Group.

References

Caress, S. M., & Steinemann, A. C. (2004). Prevalence of multiple chemical sensitivities: a population-based study in the southeastern United States. American journal of public health, 94(5), 746-7.

Martin, J. J., MD. (2017, August 13). Multiple Chemical Sensitivity (MCS): Symptoms, Causes, treatment. Retrieved December 7, 2018, from https://www.webmd.com/allergies/multiple-chemical-sensitivity#1