[00:00:00] Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher, and I've lived with Multiple Chemical Sensitivity, or MCS, for years.

The illness affects millions around the world, and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticides, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodations can be really complicated. Dismissed by healthcare providers, employers, even loved ones, many feel misunderstood, isolated, and invisible.

This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

Research has long backed up the fact that MCS is a physiological illness. It happens in the body, and folks with the condition experience a wide range of debilitating symptoms. And yet, for many people with MCS, one of the greatest challenges is having the illness diagnosed by a physician or healthcare professional.

So what does it mean when we can't get a diagnosis? Feel free to reach out and share your stories.

That's what I'm exploring today: the diagnosis. I'm speaking with Annemarie Jutel, Ph.D., Professor of Health in the School of Nursing, Midwifery, and Health Practice at Te Herenga Waka, Victoria University of Wellington.

I reached out to Professor Jutel because I'm fascinated by the ways in which a diagnosis—or the inability to get one—affects the lives of people with MCS. She's written books and research papers and has long explored the complexities and importance of diagnosis.

You'll hear Professor Jutel explore the transformative nature of a diagnosis—and more.

Aaron Goodman: Well, Annemarie, thank you so much for joining me. I've been really looking forward to speaking with you.

[00:01:38] Annemarie:
Thank you. It's a pleasure to be here.

[00:01:41] Aaron Goodman:
I know your research isn't directly focused on Multiple Chemical Sensitivity, but there's so much in your research that I think is relevant to folks with the illness.

I wanted to start by asking you about what you describe as the transformative nature of the diagnostic moment. The ability of a diagnosis to convey identity is powerful.

For example, you write that patients who have diabetes or bipolar disorder often use those terms as part of their identity: "I am diabetic." "I am bipolar."

What is the transformative nature of the diagnosis?

[00:02:18] Annemarie:
One of the things about the power of diagnosis—and why it’s so powerful—is because medicine is so powerful.

Why is medicine so powerful? It's one of the few professions that self-regulates. It's also the profession that differentiates between normality and what isn't normal, right? It's the profession that says, "You're okay" or "You're not okay."

That's power, isn't it? By giving you a diagnosis, medicine essentially says: "You're okay, but you're sick."

Medicine can tell the world whether you need to come to work or not. That's power.

In my book, Putting a Name to It: Diagnosis in Contemporary Society, I discuss the diagnosis of compassion fatigue. My research found the first mention of compassion fatigue as a disease in a Portuguese nursing journal in the early 1990s. It was specifically about ICU nurses. I was one of those.

What was interesting is that they discussed it in diagnostic terms rather than from a labor and management perspective. The journal didn’t say, "ICU nurses are overwhelmed because they’re under-resourced and overworked." Instead, it was presented as a diagnostic issue: compassion fatigue.

Of course, if you have three dying patients, no debriefing, and not enough support, you’ll burn out. Is that compassion fatigue or management failure?

Diagnosis has more power than management failure.

So let's apply that to Multiple Chemical Sensitivity. I know that everyone listening either feels very unwell or is close to someone who does—and that’s a heavy burden. We're talking about pollution here. Diagnoses are essential when it comes to impacting corporate legislation and regulation.

A diagnosis helps individuals feel validated, but it's also crucial for political action. It says: Hey, something is happening here. We need to fix it.

[00:04:24] Aaron Goodman:
I want to turn back to the notion of classification.

When people with MCS present at a doctor’s office with symptoms across multiple systems triggered by chemical exposure, the response is often... confusion. The doctor’s overwhelmed, short on time, and unsure how to respond.

[00:04:46] Annemarie:
If I may put on my nurse hat here—because I'm also a nurse—I'm deeply interested in how we tell stories of diagnosis.

The moment when you tell your story to a doctor is powerful, but also challenging. Doctors have limited time and often default to what they already know. So, it’s about crafting your narrative strategically.

Let me share a personal example. My husband has long COVID. Recently, he needed to see a doctor on a Saturday, which meant seeing someone unfamiliar.

We had to decide: What’s the key point to communicate? Should we highlight the upper respiratory symptoms? Mention the long COVID diagnosis? Or bring up the fact that our son recently had pneumonia?

We realized that to get the attention we needed, we had to be clear and succinct.

For people with MCS, this might mean saying something like:
"I have Multiple Chemical Sensitivity, which manifests as X. Today, I'm worried about Y."

It’s tempting to list every symptom to ensure the doctor doesn't miss anything. But that often backfires and leads to the patient being dismissed as anxious or overwhelmed.

So, practice telling your story. Share it with friends. Refine it until it’s clear, calm, and precise.

[00:07:00] Aaron Goodman:
One of the challenges I recently faced was with a new medical provider.

As soon as I mentioned my MCS history, I felt a shift. There was a distinct before and after. Suddenly, I was being judged.

You write that a diagnosis must not only be visible but also agreed upon. HIV/AIDS went through a long period of medical disagreement before consensus emerged. The same applies to dyslexia and long COVID today.

Right now, with MCS, there's no consensus. Is that why we often encounter bewilderment and dismissal?

[00:08:02] Annemarie:
Yes—and no.

Even with consensus, there will always be skepticism about illnesses that don’t present in a neat, linear fashion.

I wrote a paper recently in Endeavour, a sociology journal, about how medicine deals with conditions it can’t fix. The reality is that medicine handles uncertainty poorly. It’s uncomfortable admitting, We don’t know.

Let me circle back to your personal story. You mentioned sensing the moment when you lost your clinician. Was it when you said "MCS"? Or did it happen later?

[00:08:42] Aaron Goodman:
It happened right after I mentioned pesticide exposure as the initial trigger. I could see the provider’s body language change.

Even though pesticide exposure is a well-documented trigger for MCS, it's rarely taught in medical training. No training means no consensus.

[00:09:19] Annemarie:
Exactly. Medical knowledge is deeply contextual. In New Zealand, where I practice, we face similar challenges.

In theory, if you have the right insurance in the U.S., you can find someone who understands chemical intolerance. But accessibility is a huge barrier.

When I chose my most recent GP, I interviewed the doctor to test their openness. I was in a position of privilege to do that, but not everyone is. If possible, I encourage patients to seek providers who display curiosity and humility.

[00:10:08] Aaron Goodman:
In many places, there are only one or two environmental health clinics—and they’re nearly impossible to access.

As a result, many people self-diagnose using community resources. One widely used tool is the Quick Environmental Exposure and Sensitivity Inventory (QEESI) from the University of Texas at San Antonio.

Would you say self-diagnosis can be both empowering and potentially problematic?

[00:11:15] Annemarie:
Yes, and I say that with caution.

Self-diagnosis can empower people to take action—like avoiding certain products or advocating for safer spaces. But it also risks isolating individuals or fostering an unproductive, symptom-focused mindset.

For instance, in the gluten intolerance community, there’s tension between people with official diagnoses and those who self-identify based on their experiences.

The danger is that people might fixate on their personal symptoms while losing sight of the larger issue: chemical pollutants in our environment.

[00:13:26] Aaron Goodman:
You write that patients bring their lived experience into the clinical encounter, while doctors bring their own narratives, shaped by medical training and institutional culture.

These two perspectives often clash—especially when it comes to MCS. Why does the medical narrative dominate?

[00:13:26] Annemarie:
Power. Medicine has immense social power, even though many healthcare professionals don’t recognize it.

Arthur Frank, a Canadian sociologist, writes beautifully about how medicine co-opts patient narratives. When he was diagnosed with cancer, his own story was replaced by a medicalized version.

Doctors expect patients to accept their authority. Patients who resist are seen as "difficult." That’s why communicating effectively, without sounding defensive, is crucial.

[00:15:01] Aaron Goodman:
I find myself moderating my language. Instead of saying, I have Multiple Chemical Sensitivity, I say, I had a pesticide exposure that triggered chronic symptoms.

[00:15:22] Annemarie:
That’s understandable.

Doctors like Lisa Sanders—who ran the Thinking Like a Doctor column in The New York Times—appreciate patient-provided context. But not all do.

There’s no perfect strategy, but clear, focused narratives increase the odds of being heard.

[00:16:18] Aaron Goodman:
Are there historical examples of illnesses that were once dismissed but later gained recognition? Lyme disease comes to mind.

[00:16:51] Annemarie:
Yes. Lyme disease became recognized largely due to the advocacy of affluent women in Connecticut—people with social capital who could influence decision-makers.

Long COVID is following a similar trajectory. The presence of doctors suffering from long COVID is forcing the medical community to pay attention to conditions like ME/CFS and MCS.

[00:18:05] Aaron Goodman:
Do you think these contested illnesses will be more accepted in the future?

[00:18:05] Annemarie:
I'm cautiously optimistic. COVID has highlighted the legitimacy of conditions involving immune dysregulation.

Allies within medicine, like Lisa Sanders, are advocating for better training and more nuanced approaches to environmental illnesses.

[00:20:50] Aaron Goodman:
Anne Marie, thank you so much for your time and insights.

[00:22:07] Annemarie:
Thank you, Aaron.

[00:22:08] Aaron Goodman:
You've been listening to the Chemical Sensitivity Podcast. I'm your host and podcast creator, Aaron Goodman.

The Chemical Sensitivity Podcast is by and for the MCS community and is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you.

If you’d like to support the podcast, visit ChemicalSensitivityPodcast.org.

To learn more, follow us on YouTube, Facebook, Instagram, X, BlueSky, and TikTok. And feel free to share your diagnostic experiences with us online.

Thanks for listening.

The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman, made possible with funds from the Marilyn Brockman Hoffman Foundation, which supports education and advocacy for MCS.

The content, opinions, and findings expressed in this podcast do not necessarily reflect the views of its sponsors.