[00:00:00] AARON GOODMAN: You are listening to The Chemical Sensitivity Podcast. I'm Aaron Goodman. I'm a journalist, documentary maker and researcher, and I'm also someone who's lived with Multiple Chemical Sensitivity or MCS for years. MCS is also called chemical intolerance, toxicant induced loss of tolerance or TILT and idiopathic environmental illness, and it affects millions around the world.

It's a condition that makes everyday life extremely challenging and unpredictable. Fragrance, air fresheners, fresh paint, scented laundry products on someone's clothing, and a lot more can trigger exhaustion, brain fog, muscle pain, rashes, and a wide range of symptoms. And yet, for all its impacts, MCS remains largely invisible.

Doctors dismiss it. Employers rarely accommodate it. Even friends and family struggle to understand The Chemical Sensitivity Podcast aims to change that. We dive into the latest research. Share real stories and explore how people navigate life with an illness many refuse to see. 

This is a special episode in which I'm exploring listeners' important questions. Before we dive in, just a couple of things. You can find the podcast's new Facebook group online. Just search for "The Chemical Sensitivity Podcast" and if you feel The Chemical Sensitivity Podcast has helped you in some way and made you feel more informed or less alone, I'd love your input.

I'm running a short listener survey to understand how the podcast can better support the MCS community. The link is in the show notes, and you can also find it on posts in the Facebook group. Thanks so much for your support. I really want to hear from you. And thanks for being part of it. As always, you can reach me at aaron@chemicalsensitivitypodcast.org.

Alright, so let me explore the first question. The first question comes from Ung Lee, and the question is, how to survive when living in a country where almost no one has heard about MCS and family members who live separately hardly believe it or take it seriously enough. I don't get the help I need, and I am denied basic necessities and healthcare and I can't get them myself.

The second question comes from Ung Lee, and it is how to survive when I'm locked in a tiny unit of a toxic complex and can't pass in the shared hallway that's constantly filled with fragrances from people who pass all day nonstop. And how can I survive because I can't open the window to breathe real clean air.

It's complicated. And a few listeners have shared some thoughts. From Therese. Therese writes, the million dollar question quote, how to remain as safe as possible, having MCS and not in a safe place. Um, so from my perspective, she writes, everyone deserves to be as safe as possible from the constant exposures to toxins that permeate the air and how to achieve that really requires some complicated action. Aviva Moses Kaar writes, surviving in a tiny unit with constant exposure is tough. Consider documenting incidents and presenting them to management or even local authorities to raise awareness about the severity of chemical sensitivity and its impacts on residents' health. Maybe that could lead to some policy changes, question mark, exclamation mark. 

Anonymous member 2 8 3 writes, in the long term, move, in the short term, wear an air purifier or use an air purifier inside the unit, a mask and a trench coat, and a hat in the hallway, and get out daily for fresh air. And sadly, trying to get accommodations at a rental unit if that's the case, may only lead to retaliation or false eviction.

Get in contact with others to brainstorm. Brainstorm your options, and I think that's a great point. We do find a lot of benefit by sharing our questions with other people with MCS on various platforms online, and I encourage you to do that as well. And I think I have one more comment for you. This comment comes from Cheryl Martin and she writes, I'm not sure how to answer, so I thought I would just give a list of possible helpful suggestions.

Number one, a window fan that can exhaust air out. These not only help with removing any offending sense, but can create a negative air effect if needed. A high quality air purifier with pounds of carbon, a respirator or carbon mask for wearing when you leave the apartment, seal every nook and cranny where scent could potentially infiltrate your space. And this includes all of your baseboards. Light fixtures, unplugs, and any vents such as bathroom vents, and find a way to seal the door that leads into the hallway. Often there is a sizable gap at the bottom of the door, and I also find that a good sized fan can be helpful. When my neighbor does his laundry, I aim it at the wall where I can smell the scent.

The next question is from Tanya Gula, my question also relates to safe housing. But I want to know how people travel. If you're not in your own vehicle listening to your podcast, I hear you and other people travel. How do you do that? The actual travel is hugely difficult with the airport and the planes, the transportation and finding somewhere safe to stay. Rental cars and taxi cabs are killers. For me, I know to call hotels and find that if they're spraying their fragrances in the air systems, 'cause I have had that happen and we've had to change hotels. I've signed up for safe housing groups, but none seem safe enough to stay at. And I've quizzed Airbnb places about their laundry cleaners and products. I've gone from traveling the world to barely leaving my house. I want to be able to travel again. Any help and advice would be greatly appreciated. 

So in response to this question, I think we could devote an entire episode to travel. So I could just speak about my own experience is that, yeah, travel is very difficult. It has been very difficult for me. I have done it, but it takes a lot of planning as Tanya writes. I've ruled out hotels. Hotels are no longer possible for me any hotel because of air fresheners and laundry products. So for example, my wife and kids took a fairly long trip and we rented Airbnbs. Each Airbnb, it is a matter of sending detailed questions about the products they use, and I request that they don't use any fragrances or pesticides prior to the visit, including laundry products. We bring our own bedding so they can remove that and towels and sometimes it works. Sometimes it doesn't work and sometimes I don't travel a lot, but there've been times when it's, as I say, it hasn't worked and I've been sick for the entire duration of the trip daily and it's been a challenge. 

Rental cars are extremely difficult. I found certain companies better than others and I always call ahead and ask them not to spray air fresheners. Doesn't always work. Mostly never works. Yeah. And airplanes, trains are very difficult I found in North America particularly because of the bathroom products that that are used on Amtrak and any travel for me and probably I for others, it depends who you're next to. And so sitting next to someone using fragrance can ruin a trip and make it very difficult. 

So let's go to the next question. And again, I welcome any feedback about travel. Here's a question. Which countries recognize MCS as a disability? So from what I've found, there are a small number of countries that recognize Multiple Chemical Sensitivity as a disability. This doesn't necessarily mean that people in these countries are guaranteed to find. Doctors who have any knowledge about it or get accommodation. But if we're talking about MCS being recognized as a disability, yes, Canada at the federal level and in at least two provinces, Ontario and Quebec, Australia, Germany, Austria, Denmark, Luxembourg, Spain, Finland, Japan, Spain, Italy. Period. If you live in any of these countries and you'd like to share feedback about whether I have this right, and if MCS is in fact recognized in your countries, does it make any difference in your day to day? It may be recognized as a disability under anti-discrimination laws, for example, but again, it may be recognized medically but that often doesn't translate into being able to access healthcare or accommodations. 

But connected to that question, Lami sends in the following question, do hospitals have ways to protect people with MCS? Several listeners shared helpful responses. The first is from Ang Brown. Ang Brown writes, yes, they are obligated to accommodate and protect people with MCS. Ang Brown writes, they'll fight us, gaslight us, they'll even verbally abuse us, but. Ultimately they're required to accommodate our needs. Ang Brown is based in Western Canada, in the province of British Columbia, and Ang writes if and continues to write, If anyone in British Columbia is having difficulty being accommodated by our British Columbia medical facilities, please reach out to her as I've been requesting accommodations in our healthcare environments for 16 years and would love to help.

That's very generous of you. Lot of experience. 

Cheryl E. Martin, previous listener that we had a response from writes, it's a good question. I don't believe so. I had to fight for an accommodation for treatment in a hospital in Ontario, in Canada that was not fragrance free. Every province varies, and though there are several fragrance free hospitals across Canada. It would still be important to let them know in advance that you have MCS and any specific requirements. 

Okay, so another listener in Ontario, Canada, Yvette Caro writes, or Yvette Caro writes, I am in Ontario and unfortunately have been to many hospitals over the years and they do not accommodate. At all. I've had such horrible experiences. 

Pierre Renee in Australia, writes in Australia I was in multiple hospitals in 2021. Despite telling staff every two hours that my allergy was perfume. Perfume, the man in the cubicle beside me was still allowed to spray deodorant each day, and it filled the ward. 

We have a very important question from Dennis or Deni Martin. The question is, how do people develop MCS if it's not from mold? When it comes to this question of what can cause MCS beyond exposure to mold, I contacted Don Want in Australia. Don completed his PhD. focused on environmental health and Multiple Chemical Sensitivity. His own family has been deeply affected by the illness. Don has a lot of knowledge in this area. So I asked Don about this question, about what can cause the illness. And here's his response. Don writes, your question indicates that the person asking needs to realize the extensive hidden background to MCS initiation. Of course, one could write a book just on that subject. There are many ways that MCS can be initiated, of which mold is quite common, however in the background is an overloading of one's systems all the way to mitochondria, which is the usual cause. If the body has been accumulating toxins and heavy metals due to having poor detoxification, then it can simply take a last straw to break the camel's back, so to speak. The last straw that triggers the onset of symptoms can be mold, Lyme disease, viral infections, medications, stress, or a simple chemical exposure. The immune system, which has been struggling to keep up with such a load, may trigger mast cell activation. Which can then lead to a cascade of problems that typify the MCS condition.

I should note, Don has a new book coming out. Its title is "Environmental Effects on Health: The Generation of Ignorance and Undone Science." I'm also going to turn to an important 2021 academic paper by Dr. Claudia Miller. And Professor Shahir Massy, who's been on the podcast who co-wrote a paper titled "Toxicant Induced Loss of Tolerance for Chemicals, Foods, and Drugs, Assessing Patterns of Exposure Behind a Global Phenomenon."

And so this, in this paper, the researchers investigate the origins and mechanisms of what they prefer to call chemical intolerance, and they also propose a two stage process known as Toxic Induced Loss of Tolerance or TILT. 

So what is TILT? TILT, according to the research, is a two stage process where people develop what they refer to as TILT, Chemical intolerance, MCS. The first stage, it involves initiation or exposure to chemicals over time. Or in one, one episode and toxicant could include, do include pesticides or indoor air contaminants. And then the stage two is characterized by what we refer to, again, as the illness that we have, where we react to numerous toxins or chemicals that likely didn't previously bother us, including chemicals, foods, and medication. 

So what's interesting in this paper, to me, beyond the description of the TILT theory is you know what Deni is asking, how do people get this illness? It doesn't just come out of the blue. It doesn't happen to everyone. But the researchers identify some common exposure events, and those are subpopulations people who experience exposures, who developed the illness at relatively the same time. For example, there were workers at the Environmental Protection Agency, headquarters in the United States who were exposed to new products, I believe it was carpet inside the building, Gulf War Veterans, casino workers who were exposed to pesticide, workers who were exposed to aircraft oil fumes, people who were exposed to chemicals and toxic pollution after the World Trade Center tragedy. People who've had surgical implants. Mold as well, and tunnel workers who were exposed to solvents. 

So those are eight major exposure events where the researchers have shown a pattern, people developing this illness. We don't have to have been exposed to chemicals or toxins in those environments, but if we've been exposed to some of the same chemicals, that may be the cause of our illnesses. So these include mixed volatile and semi volatile organic compounds. So these are known as VOCs. Again, pesticides and combustion products. So these are the most common things that people have been exposed to that have led to the development of. MCS, TILT, chemical intolerance when aesthetic organic chemicals and their combustion products. These include xylene, benzene, acetone, were the primary ones.

So mold is an important trigger for MCS, but many other things are also a culprit. In my case, it was pesticide. So Sam Font or Fonte writes, why do you think it's taking so long for real change to happen when it comes to curbing or limiting the over-saturation of fragrances in everyday life? It's a complicated question.

We'll first turn to a response from listener Lisa Moe, and then I can talk about some things I found online. Lisa Moe writes, just watch commercial television, see commercials in magazines. Ads in magazines, movies, videos, TV shows with product placement. The marketing is relentless, brainwashing and addiction.

It took many decades and many health officials speaking out to undo the same for tobacco use. So what are the roots of the saturation or oversaturation of fragrances in society? These have to, as far as I have found online, in summary, they have to do with cultural norms and social pressure. 

So we live in culture, particularly in the west and beyond, where fragrance is very common. Perfume scented products, laundry products, increasingly air fresheners - we're told through ads and marketing - they make us more attractive. They make us cleaner, and they're important part of taking care of our bodies. So when we ask people to be fragrance free, this is something that is going against the grain of our current Western culture and other cultures. And as we know, people often don't respond well. 

And so what's behind all this marketing and product placement? Just going to the grocery store we all see the prominent place that these scented chemical products have in our society, and this because wealthy companies stand to gain profit from selling these, and they often stand in the way to adopting better regulations that could mean less harmful exposures and also the development of fragrance free products. 

When it comes to the question of the oversaturation of chemicals and fragrances just about everywhere, while we can't seem to get away from these, I reached out to someone I really respect. Her name is Liza Grandia. Liza is a professor of anthropology at the University of California Davis in the United States. 

Professor Grandia has been on the podcast and also has multiple chemical sensitivity and has been open about it for quite some time, and that takes a lot of courage in academia and in any profession to do that, and has even gone so far as. Calling herself Professor Canary, to reflect the advocacy that she's done to create awareness about MCS to lobby for change.

So I reached out to Professor Grandia about the presence of fragrance and chemicals, just about everywhere. And here's what Liza Grande responded with; that is the million dollar question, isn't it? I'm a bit ill the moment, so I'll be brief. The ubiquity of fragrances makes it very hard for the public to realize the health harms. Dr. Claudia Miller refers to this as the masking effect, but I also think there's a social cultural component in which people downplay the risks of everyday and cumulative low dose exposures. The general public, for example, still has the idea that cancer is caused by one bad exposure. I recall being amazed to learn that cancer is more likely caused by multiple hits of frequent toxic exposures plus inflammatory processes. So a little bit can hurt you. However, having had some success in getting institutions to change their policies, school district, my university, my professional association to become fragrance free, I think those of us with MCS often suffer in silence. I've been pleasantly surprised that many administrators get it personally. I've learned that when someone refuses to listen, they likely are in the lucky two thirds of the population, not sickened by fragrances. That said, from Ann Steinman's research, at least a third of the population dislikes synthetic fragrances. So it's worth trying again with a different decision maker.

And of course one of the questions that comes up again and again that I like to ask guests is, how could it possibly be that these products are mass marketed and sold to the masses when they're known to be harmful? We all know how harmful they are. How is it that to fragrance can be written on a label when it really doesn't tell anything about what's inside the fragrance? So these are challenges and gaps in when it comes to regulation, and it's also about the limited awareness of health impacts. 

I just had a conversation today with some of my neighbours who expressed to me that they had no idea that certain scented and chemical laundry detergents were harmful to health.

So we're, we may be there with tobacco smoke, but we have to a long way to go when it comes to awareness about the health impacts of fragrance, don't we? 

And then there's the enforcement challenges, as we've talked about on this podcast. And as we all know, adopting a fragrance free policy or fragrance awareness policy is one step at really enforcing it and working with people to, to make it work is really complicated.

It takes a long time so we can, yeah. So it's a combination of business, economic culture, regulation and societal norms. And so maybe we can just wrap up this little bit about what we can do to feel empowered. 'Cause sometimes it can really feel overwhelming, can it? We can make decisions to be fragrance free and in our homes as much as possible and make them safe as possible. 

We can diplomatically as possible advocate and ask others. It's really difficult, I found, to get up the courage to ask whether it's with family or friends or at work. At school. We can support fragrance-free products and brands with our dollars and cents, the way we shop and, share strategies among community, share our experiences in community as well. 

Alright, Shelly Dati has a question. Shelly writes, in multiple large group settings one thing I've noticed is that so many women who've developed MCS also struggle with severe endometriosis. PCOS. Polycystic ovary syndrome. It's a common hormonal and metabolic disorder that affects people with ovaries, and it commonly begins when people are in their late teens or early twenties. And endometriosis is a chronic, estrogen dependent inflammatory disease characterized by the presence of endometrium like tissue outside the uterus, which can cause pelvic pain, infertility, and systemic. Symptoms. Shelly writes, it's always struck me, maybe develop, worsening MCS around peri or menopause stage. Could there be a hormonal link? 

And so Christian RA writes, I've had hyperemia for years, but MCS emerged in menopause. And EI Crusade shares, yes, I had undiagnosed endo and fibroids and got MCS in my late thirties and AEM, I'm not sure which association that refers to, has a conference each year and we should write them to put this up as a topic.

So I have found a brief summary. So yes, multiple chemical sensitivity. Frequently, we know it occurs more often in women. And with symptoms often occurring when women are in reproductive transition, when women are pregnant, experiencing perimenopause and menopause. So the hormones could play a role. Estrogen is known to sensitize mast cells and TRP receptors.

Which Dr. Molo, who's been on the podcast talks about, which have a role in pain and detecting irritants and mechanisms also active in endometriosis. So in summary, the women with endometriosis or PCOS may experience immune hormonal or metabolic vulnerabilities that increase the risk of chemical intolerance.

Although no long-term studies have been conducted and at the moment there is not a proven causal link, but like anything, when it comes to MCS, I really like the term citizen science. So if when we, the people, who have the illness, share information, share the deep knowledge that we have, women have gained through lived experience. And when we potentially ally with helpful ethical researchers who value our experiences, we can collaboratively produce really important knowledge. 

There's another question from Cheryl Martin and I think it's an important question and one that I have asked many guests and I'll continue to ask them. The question is, why is it impossible to have transparency? The labeling of ingredients, and I'm assuming Cheryl, you mean labeling transparency and labeling when it comes to fragrance and chemicals in consumer products and personal care products. 

So what I have found in summary online is in many parts of the world fragrance is considered or can be regulated as a trade secret, so companies are not obligated to disclose what is in the fragrance. They can keep that confidential. They don't have to put it on labels, and that can mean concealing or not disclosing dozens, maybe even hundreds of individual chemicals that go into producing fragrance.

We've talked a bit about regulation. Often regulation laws haven't kept pace, and companies have the upper edge and again, are not forced to disclose reveal contents of fragrance. There are influential lobby groups connected to the fragrance industry, which influence the development of legislation, and often consumer health and wellbeing is not necessarily the priority when it comes to disclosing what fragrances are made of. 

As I noted, as we know, it could be hundreds of individual chemicals and it might just not be practical, although I'd rather see it, I'm sure we'd rather see it. Yeah. Along with lab groups, companies of the industry has not been willing to date because if they were to disclose their products, they're likely concerned about the repercussions of those, that people would make better choices or different choices. 

Companies may not necessarily know exactly what goes into their products because they could be bottled in one country. Something could be sourced from a different country put together in another country, but it's possible that they may not know exactly what's in there. I think they need to find out though and do a better job. 

There are some parts of the world that do a better job, obligating corporations to be transparent. When it comes to fragrance labeling, and this is something that I often raise with guests and their take on it. For example, if the European Union does a better job, why couldn't other countries follow suit?

So EU is known force companies in some cases to be more transparent, but they, there are still some, ways companies get around it, particularly apparently when it comes to cleaning products in the EU, but it's again, further ahead in North America in terms of transparency. Other countries and parts of the world that are more proactive. Norway, apparently California in the United States, and Canada. 

But in Canada where I'm based, labels can still, corporations can still list "fragrance." It's an umbrella term that doesn't really help us at all, does it? Japan is also known to be one of the more progressive countries when it comes to forcing companies to label more accurately.

So another question from Fee. So Fee asks, are there any recovery stories? How people got better from MCS? I'd love to know, and this is, something that I think about sometimes. Just to be completely transparent with you, a little bit reluctant to share recovery stories, and the only reason is there's a couple reasons.

Sometimes it's because people who claim to be recovered from MCS, some people may have another agenda and they may be trying to sell a product or a service. Because some people reach out and contact me and they love to come on the podcast to talk about how they got better. And you know, I use my spidey senses a lot, intuition there.

And also because MCS is, as we know, very complicated and what works for someone might not necessarily work for others. And you may notice that I never dispense with medical advice on this podcast because it's not really what it's about. There are a lot of spaces where medical information, treatment supplements information is available.

And we also share information from our own lived experiences on online platforms. But it's just not something that I do because I don't want to recommend anything and someone could be adversely affected. So that's not the nature of this podcast and why I do it. Do I believe people can be fully cured, if that's the word, or fully recovered from MCS.

I think all I know is in my own case. There have been times when I've been less reactive to toxins and times when I've been a lot more, so I do know that it ebbs and flows. 

A listener who is very well informed, Wendy Curley, says, it's a progressive illness. I believe that if we're not mindful of what we're exposed to and not trying not to be exposed as much as possible, we can be affected much more seriously.

But having said all that, I'm gonna share one listener's comments. These comments come from Janice Martin. Janice writes, we've had great success by purchasing the model home of a new housing edition. It had folks walking through it for two years with only a small office in the garage, so it had completely off-gas and it never had a water leak. The air quality was tested several ways and was the same inside as outdoors. Zero mold. I've been here three and a half years. The house is now five years old, and I finally achieved remission. From CIRS,  - I don't know what CIRS is - 1.5 years ago after nine years of struggle with no success. Another helpful quality of this property is that it's on a hill and breezes blow through the house and across the back porch, turning 70 and two months and feel better, less restrict, more energetic than I have since my twenties. I'm able to travel by myself, which I couldn't do for years. I also went back to work as a personal chef and cook for folks in my situation. 

So here's a definition of CIRS, chronic inflammatory response syndrome, and CIRS is a distinct condition. It's not the same as Multiple Chemical Sensitivity. It's defined as chronic inflammatory response syndrome where systemic inflammation occurs after triggers after exposure to bio-toxins. Most often mold, and it could be a genetic predisposition. So it could cause symptoms that are similar to MCS, but they're not the same condition necessarily. 

So I'm not an expert. I'm not a, not a physician. I'm not a medical researcher, and I'm not sure if Janice Martin, you have MCS, but you write that you've had some success in getting better from CIS.

Kyla Joy Padilla writes, I'm curious if MCS is part of why there are strange side effects to medications and Kyla Joy Padilla writes, I'm the side effect queen. So do people with MCS react to medication, and listener Rosa Marie McDonald has a similar parallel question because, without disclosing too much information, was prescribed or recommended a medication and writes, I'm not sure how sensitive people go about using these products or medications.

And I think these are very good questions. People who have MCS often have reactions to supplements and medications, and these can. Often trigger reactions in individuals who are sensitive. So I'm not gonna respond to the question of the specific medicine 'cause I don't want to reveal personal information by your condition.

But yes, people with MCS can have heightened sensitivity to medication and it can be really difficult. 

I've seen, and you may have seen someone posting online in Facebook groups fairly regularly about trying to find an antidepressant that doesn't cause a reaction. So it's a very difficult situation to be in where one could potentially benefit from a medication, in this case, an antidepressant, not from the listener who wrote in, but from person I mentioned who commented online and for all kinds of conditions.

These are real questions that many of us have. How to, for example, if we ever need chemotherapy, if we ever need to take prescription medication, how we're going to do that? I know in my case, I try to, when it comes to medication, get the most natural kind without any preservatives or dyes. Others online, I've seen here recommended going to compound pharmacies as much as possible.

Others have recommended starting in very low doses just to try and keeping an eye out for reactions, but it's not easy. 

Yvette Caro, whom I mentioned before, listener writes, I've always wondered why or how different chemicals or compounds affect my body differently. So what I've found is that we can respond differently to different chemicals in different ways. And one thing that fascinates me is the range of reactions that people report. Online, the number of systems in the body that are affected and their reactions can be very different, and that's because of our individual biologies and the compounds, the chemical structures, how these interact with the receptors in the body, with tissues, with enzymes, the pathways in which they enter the body, the state of our nervous system, our hormonal conditions, if that's the way to say it, the level of inflammation, genetics. The gut microbiome, other existing health conditions and prior exposures, all of this can, I'm reading effect lead to different reactions. 

Makes sense, right? When there isn't really one universal reaction. We all react in different ways and many systems of the body react in different ways. 

I had a question that comes up for me in my mind fairly frequently, and some people call MCS a fragrance allergy. And I've known for some time that, like you, that MCS is not an allergy, but I don't know why that is, why it isn't. So I reached out to Dr. John Melo, who is a physician based in Ontario in Canada, who's a specialist in multiple chemical sensitivities, and I asked why is MCS not considered allergy? And he very kindly responded, an allergy is a very specific reaction by the immune system. Involving antibodies called Immunoglobulin E (IgE). This is how allergists define an allergic reaction. These specific allergic reactions are not involved in the sensitization to chemicals except under specific conditions such as skin rash on physical contact. The sensitization to chemicals seen in MCS involves a different reaction, namely the sensitization chemical sensors called TRP receptors that exist mainly on cell surfaces, especially in the nervous system. 

Alright, so I hope that's helpful. 

Another really important question on getting a diagnosis and medical support. So I'm turning to listeners as I am for a lot of these questions that Chantelle Kirk kindly writes, I read about the about or the bio section medical practitioners online having a military background has been helpful as more awareness of chemical injuries. 

I believe Chantel's referring to physicians who may have a military background, if I'm misinterpreting that, please correct me.

Chantel also writes, applied kinesiology practitioners have been the best for her as far as testing and acute treatment. 

P Renee in Australia writes, never met a decent doctor. The ladies at the patch testing clinic are my current heroes. Took six years of persistence, three on a waiting list, and another three years and six month of dermatology clinic visits to get a referral for patch testing. Patch testing, confirmed multiple chemical allergies. 

What I take away from your comments, your sharing, is that yeah, we often do rely on our own lived experience and wisdom, and we often do have a lot of knowledge. 

Steve Chalmers writes, his family's falsely have never discussing MCS with a mainstream physician, much less pushing hard for solutions that physicians simply aren't equipped to provide, left our records clean enough that when presenting it with a difficult, life-threatening grey area complaint we got taken seriously. So I wish the world wasn't this way. 

Obviously, the medical profession of the world are in much better shape assisting people with MCS than they were 20 years ago when our journey began. 

A couple more questions. Important questions, difficult questions. The question came in about medical assistance in dying, and I open this up for listeners to share thoughts whether people have thoughts on medical assistance in dying. I know it's not universally accessible, it's accessible in Canada. Someone with MCS, at least one person with MCS chose to die this way. So there are conflicting views on it. And so that's what I want to share with you.

Sherry Roseberg writes, I never thought I would. This is completely difficult to admit, but in recent years I've considered it even to the point of filling out the paperwork. I haven't pursued it any further as yet, but I do think about it. Despite MAID medical assistance and dying, being the only solution my mind comes up with for periods of time as an end to the torturous pain and suffering I've had to keep during on a daily basis. I do not actually want to die. Air won't get into my lungs. All the reasons why I've lost so much hope recently, but I'll say, and that a huge part of it does involve the devastatingly, huge lack of safe, affordable housing options for those of us with MCS. 

So yes, a hundred percent I agree. More safe housing and resources should be made available. Something we definitely desperately need. 

Steve Chalmers, he writes, I support the existence of MAID. With the correct controls, not killing the disabled and not locking out someone for whom it's appropriate. 

And Shelly Dipe writes, absolutely. And it's no one's business or right to tell me otherwise. 

We have a question from an anonymous listener, and the question is this, how do I spend time with my daughters when they live at college where fragrance is now saturated into everything they own? When I just go anyway, I'm so ill. 

That's a really difficult question. And if we extend it, how do we spend time with people in our lives when fragrance is present or prevalent when it's a big problem for us? 

Diane Perry, listener writes, I use my 3M personal air purifying, respirator, or pap. Whenever I'm going anywhere that will be a trigger. 

We have an episode on the podcast where two women with MCS talk about their lived experiences using those, and you can find that at chemicalsensitivitypodcast.org and on the podcast YouTube channel.

Here's an important question from a listener whose name I don't have on hand. It's about options. Those of us with MCS who will need institutional or home care as we age something, I'm sure many listeners think about, certainly something I think about. 

Steve Chalmers writes, to my knowledge, there's no viable nursing home or assisted living, which is MCS safe.

Sandy Johansson writes, I'm 80 and still extremely self-reliant. I once knew a woman 10 years ago, older than me. She struggled. She had government housing. Someone had to help and check on her. I know it was very difficult that she was continue exposed to toxins. 

I think we're going to end on one question, which is the following, how to create and deliver information about MCS and toxic household chemicals for people who don't have MCS.

So I turn to Linda Tabor, who goes by Linda, is in the house on social media because Linda is an advocate and very creative in her use of social media to communicate really important information about MCS. And Linda kindly responded, my initial response is to try to make it as short and succinct as possible since attention span are so short nowadays. Think of elevator speech length, although I still struggle with that big time with my wordy self, unless I'm creating a meme that is visuals that help paint a picture that doesn't need as many words. And I use Canva to make that content. Content like that, ideally, whoever we're trying to deliver the information to has to want and be open to learn and be willing to enact changes. It's best to read the room to better gauge what delivery system would work best for each situation. Sadly, it's backfired on some folks in various ways, just as much as it's helped others. Be sure to share facts versus feelings so they have something to reference if they decide to dive deeper into the subject. And that's where The Fragrance Free Coalition, printable handouts and posters are so handy to keep on hand.  So, Fragrance Free Coalition is a group, and they have a Facebook group. I encourage you to check them out as well as any other relevant handouts you can find or create. Of course, you can share direct experiences to personalize it to the level you feel comfortable with depending on the audience. Try to explain in ways that compare real life scenarios that most folks will likely understand. For example. Comparing each scented product being used to a lit cigarette, or when folks say, only use light scents, tell them, let them, that's just like blowing smoke in your face and saying it was from a Marlboro Light instead of a Marlboro Red. Or let them know that none of the outer fragrance chemicals essential is do anything to improve the efficacy of a product, but instead only add layers of pollutants to the air. Surfaces they're applied to, bodies they're used on, et cetera, or let them know how unnaturally potent essential oils and chemicals are, fragrance is, and they should never be used casually. I wish I had a basic, simple answer that'll cover all the bases we need to cover as we have to continually advocate for ourselves, but it takes a variety of methods and messages. 

Thank you so much to Linda Tabor for this very comprehensive answer and for everyone who shared questions and who shared responses, I really appreciate it.

If you'd like to send in further questions. We can do this again, and I would reach out to experts. I'll reach out to you and ask for more answers. So thanks so much for listening and watching, and we'll talk again soon. 

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You've been listening to The Chemical Sensitivity Podcast. I'm the podcast creator, Aaron Goodman. The Chemical Sensitivity podcast is by and for the MCS community. The podcast is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit chemicalsensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS.

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity. The content opinions, finding statements and recommendations expressed in this Chemical Sensitivity podcast and associated website do not necessarily reflect the views and opinions of its sponsors.