Femammal
Femammal
Living with Multiple Chemical Sensitivity
R.S. Hurley uses her experience of Multiple Chemical Sensitivity to advocate on behalf of others with that diagnosis. MCS disproportionately affects women. Ms. Hurley authored a Multiple Chemical Sensitivity guide for HUD housing, a resource to help people secure their rights and accommodations when living in housing funded by the US Department of Housing and Urban Development
But You Look Good booklet https://invisibledisabilities.org/shop/ida-store/invisible-disabilities-book and "Choose Friendships over Fragrances" https://www.youtube.com/watch?v=Lu0_wP5hxyo
2009 CDC Policy Limits https://www.chemicalsensitivityfoundation.org/pdf/CDC-2009-Indoor-Environmental-Quality-internal-policy542.pdf
Amputated Lives by Alison Johnson http://www.alisonjohnsonmcs.com/
http://chemicalsensitivityfoundation.org including Ms. Hurley's own guide
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Logo design: copyright Darragh Hannan
[00:18] Greer:
Hi, this is Greer, your host for Femammal, the podcast that holds space for women to explore what it means to live well in our bodies and celebrates moving through this world as female mammals.
[00:37] Greer:
R.S. Hurley lives in California and has used her experience of Multiple Chemical Sensitivity to advocate on behalf of others with that diagnosis. The international prevalence of adults who report adverse health effects from fragranced consumer products is 32.2% with 21% reporting chemical sensitivity, and the condition disproportionately affects women. Notably, Ms. Hurley authored a Multiple Chemical Sensitivity guide for HUD housing, a well-researched resource to help people secure their rights and necessary accommodations when living in housing funded by the US Department of Housing and Urban Development. She has a passion for dance, gardening, photography, and for her family.
[01:27] Greer:
Well, welcome, Ms. Hurley. Thank you so much for being open to sharing your experience with Multiple Chemical Sensitivity. And I want to really thank you for how you coached me to set up the interview in a way that would work well for you. I really appreciate that. So I wonder if you could start by explaining to us what Multiple Chemical Sensitivity is and how you developed the condition.
[01:51] Ms. Hurley:
Okay. Well, thank you, Ms. Hannan. Multiple Chemical Sensitivity, which is also called MCS, is an environmental illness caused by chemical injury to the nervous system. It's a permanent disorder that progresses with each chemical exposure. And I'd like to share something from Dr. Claudia Miller, who refers to this condition as toxic induced loss of tolerance. And she describes MCS as a two-stage disease started by a one-time major exposure, or a series of very low-level chemical exposures, which is followed by symptoms triggered by everyday chemicals, foods, and drugs that never bothered before. So these symptoms may involve any and every organ system, from neurological symptoms like memory problems, brain fog and mood changes, to gastrointestinal problems, migraines, headaches, fatigue, and muscle pain. Now, I was chemically injured and came down with MCS after moving into a rental that was completely gutted and remodeled with new underflooring, drywall, carpet, cabinets, et cetera. And this was tragic. My daughters and I were just delighted to be moving to this beautiful rental, and I became hideously ill and didn't know why until about two years later when a chiropractor suggested, hey, maybe you're getting sick from the chemicals outgassing from the new carpet. So I think one thing that's significant is that my case demonstrates that MCS is commonly caused by indoor air quality from our own homes and workplaces.
[04:05] Greer:
That's really helpful to understand and really gut wrenching. Like you said, you were so excited to move into a really beautiful new place, and then it made you so sick.
[04:17] Ms. Hurley:
Yeah, and devastating, because it is a permanent disorder. It progresses in time. Definitely.
[04:28] Greer:
Was there a way to confirm the diagnosis, or did they put you through a bunch of tests, or is it more of a process of elimination type thing?
[04:37] Ms. Hurley:
Well, I was diagnosed officially by an occupational health and environmental medicine specialist at the University of California, San Francisco, and basically he diagnosed me through my symptoms. I had been going around to various doctors, and many of whom were treating me like I was a little bit nuts because they didn't know about the diagnosis. I nearly broke out in tears when this doctor at UCSF told me, you're not crazy. You have something called Multiple Chemical Sensitivity.
[05:18] Greer:
Thanks for sharing that, because it has been kind of an obscure diagnosis. I feel like I started hearing about it maybe five years ago, but just very rarely. And it needs to be more prominent because it affects so many people, and it just feels so terrible to go to a health professional and they look at you like two heads because you have something that they weren't educated to know about.
[05:46] Ms. Hurley:
Exactly.
[05:48] Greer:
So could you describe for us how your life changed after developing MCS?
[05:53] Ms. Hurley:
Well, my life was basically amputated. I could no longer work or be in the company of others. I could no longer participate in anything social or even go to church. And I borrow the word amputated from Allison Johnson, who founded the Chemical Sensitivity Foundation and wrote a book called Amputated Lives: Coping with Chemical Sensitivity. And from the back of her cover, I'd like to read the following: "The condition of chemical sensitivity has been rapidly growing with the proliferation of new untested chemicals in our environment. In recent decades, people from many walks of life have developed a new intolerance for the chemicals found in perfume, air freshener, cleaning products, fabric softeners, diesel and auto exhaust, new carpet, paint, and other products. Their ranks include large numbers of Exxon Valdez cleanup workers, Gulf War veterans, 911 first-responders, and FEMA trailer residents. Part one of Amputated Lives analyzes the development of chemical sensitivity in these various groups and its consequences. Part two illustrates, with stories from various individuals how this condition can quickly wreck what was once a good life."
[07:30] Greer:
Yeah, you shared that resource with me, and it will be in the show notes if folks want to access excerpts from that book or look up the reference to that book so that they can read more. But I just found some of the stories in there absolutely gut wrenching. And I think what you describe and what some of the folks featured in the book describe is that even though something like the carpet triggered the symptoms, actually all kinds of chemicals in the environment then become a problem after that initial trigger event. So it creates that isolation you're describing.
[08:07] Ms. Hurley:
Right, exactly.
[08:09] Greer:
That's so hard. So what's your experience been like seeking medical care since developing MCS?
[08:17] Ms. Hurley:
Well, I'll start by saying the only treatment for MCS is avoidance of chemicals, which is nearly impossible and requires hypervigilance. Though MCS is not an allergic condition, having MCS is likened to being allergic to the world. Those with MCS essentially have to live in a bubble. For example, I live as a recluse. I have a helper that goes out into the world for me to do my shopping and errands. I also have to be cautious about who I let into my home in order to avoid exposures to the chemicals in their personal care products and clothing, for example. Now, as far as my experience seeking medical care since developing MCs, this is a good question. I think I already mentioned a bit about that before. But from my experience I would recommend to anyone who does come down with MCs to quickly drop any healthcare practitioner who questions the diagnosis and move on to healthcare providers that understand MCS and have a history of treating patients with this illness. Now, I came down with MCS in the early 90s and at that time practitioners informed about this illness were very few and far between and difficult to find. For anyone who does come down with MCS, I found the medical practitioners that were most helpful to me were in the field of occupational health and environmental medicine and you can find those specialists through university medical centers usually and then also integrative medical physicians. I was just very blessed to find these types of providers who are truly experts.
[10:33] Greer:
That's great advice because I had never heard of, you said environmental medicine? That's a new field to me.
[10:40] Ms. Hurley:
Well, actually I was going to get to this a little bit later, but I'll jump to it now. Actually, MCS was first diagnosed in 1940 by the father of environmental medicine, Dr. Theron Randolph and it has been recognized as a disability by Social Security since 1970. Yet here we are a half a century later and the condition is little known even though, as you mentioned in your introduction, Dr. Ann Steinemann's 2017 studies that revealed there is an international chemical sensitivity prevalence of 21.2% for those who report actually being diagnosed with MCS and/or have fragrance sensitivity. Now that was 2017 and so the percentage is even higher today. I think one of the reasons why this illness is so unknown is that those of us who have it have to shelter in our homes and not interact much with society. So that's one of the reasons. Another reason, as the doctor at UCSF explained to me is that there's no money for research in this field because most of the money for research in the medical field comes from chemical companies who are developing and promoting pharmaceutical products. So a chemical company does not want to fund any research that will show it is their chemicals that are making people sick.
[12:38] Greer:
That's so ironic. That's excruciating! Oh my goodness. Wow, that makes sense.
[12:44] Ms. Hurley:
So the other thing I wanted to say, I counsel a lot of people and it is very difficult to, first of all, figure out what's wrong with you and then secondly, find a doctor that can help you. And so if there's anybody listening to the podcast that is new to this illness, I always recommend consulting with Dr Ann McCampbell, who is an expert in the field of MCS and a leading disability advocate for over a quarter of a century. Though she doesn't provide direct medical care, she does help clients find and work with their own physicians. And she's written a wonderful booklet called Multiple Chemical Sensitivity, and it's an excellent introduction to MCS that's written in a succinct, easy to read overview that's easy for anyone to understand. And you can contact her or order her booklet through her website, annmccampbellmd.com.
[13:56] Greer:
Thanks. That's a great recommendation. And that'll be in the show notes too, for anyone looking for that type of info. I think you touched on this already, but in case you had more to share, what steps have you taken to get your health needs met since developing MCS?
[14:14] Ms. Hurley:
Well, I did say, didn't I, that the only treatment for MCS is avoidance of chemicals. So basically, my health care, it boils down to I have to live as a recluse, right? And I have to have a helper that goes out and do my shopping and errands so that I can avoid triggers that are everywhere in the world. And this hypervigilance gets to be very exhausting. For example, I have to pick healthcare providers that have fragrance free policies for their offices. And I had a particular provider for years, I had no trouble going in and out of his office until one day I went in and they had some kind of diffuser for essential oil wafting through the office. So I got a terrible exposure unexpectedly, and that happens with certain regularity. So in order to get my own health needs met, I have to really communicate with the healthcare provider and their office staff. Sometimes I have to arrange to come in through a back door or a side door so I don't have to sit in a waiting room with other people that could be very fragrant, and sometimes that causes raised eyebrows. And I often meet a lot of resistance and I often have to advocate for myself over and over just to get into one healthcare provider.
[16:09] Greer:
Thanks for painting the picture with that kind of detail. I think probably anyone who hasn't experienced this diagnosis themselves maybe never thought through all the steps that it would take for you to actually get in the door to see your provider and to worry about the lobby and to be mindful upfront about these policies that the office may or may not have. So that's a really helpful way for us to think through that. And then you extrapolate, and it's like every interaction in your life, you're probably thinking in that detail. That word hypervigilance you used seems really apt.
[16:45] Ms. Hurley:
Yeah. I can give you another example how to take care of my health. I had the wonderful opportunity to attend my daughter's graduation for her PhD. I had to travel out of state to her college, and I spent I can't tell you how much time trying to find a motel or airbnb or someplace that would be free of chemicals and safe for me to stay. And finally ran across this man who had a very small hotel, and he convinced me that they didn't use any kind of fragrant products whatsoever. Well, lo and behold, we get there that night, late that night, and open up the bed only to find fragrant laundry sheets in between the bed linens. And the bathroom was so hideously fragrant, you opened the door to the room and you could smell it from outside. So this is how I took care of my health in that situation. I found a lounge chair and slept outside the door.
[18:04] Greer:
That's just heartbreaking.
[18:09] Ms. Hurley:
And he wouldn't refund our money.
Greer:
Oh, my gosh.
Ms. Hurley:
But we did find another place that actually did work for the second night. So that was a blessing. Yeah. It's almost hideous when you hear the stories of what lengths people have to go to accommodate an MCS disability. I'm not alone in what I'm sharing with you.
[18:36] Greer:
No, you're not. And I really appreciate listening to you, how resourceful you are and how it seems like kind of you have to be the expert because no one else really is looking out for you in this way. And it's just so hard. But knowing that the folks who listen to this podcast are very empathetic people and hearing your stories, they might be thinking, well, I want someone to be able to attend her daughter's graduation. What are some things that I can do to be less of a problem in those sorts of public spaces? So what are some steps that listeners could take on a daily basis to be more considerate of people who may have MCS?
[19:21] Ms. Hurley:
Well, I think the first step is to believe the diagnosis. That's number one. If a person hasn't heard of it, they might question it. But I think to be a supportive friend or considerate person, really believe the diagnosis, believe what the person is saying to you. And I think the next step is to seek education about how to be supportive, because this isn't something that's commonly known. And in order to be supportive, it does take some adjustments by the friend or the family. And I highly recommend a YouTube video called Choose Friendships Over Fragrances. This wonderful video was produced by invisibledisabilities.org. They also have a booklet called But You Look Good that you can order from them, which is a guide for how to support chronically ill friends. And I think the last thing I'd like to mention is that if your friend with MCS indicates to you that she or he can't be near you, don't take it personally. Many people I encounter live healthy lifestyles and they believe themselves to be nonfragrant because they choose, for example, personal care products that are natural. But simply put, they're not unfragrant enough for me because even so-called natural and organic scents like botanicals and essential oils trigger MCS symptoms as bad as petroleum-based fragrances. And I guess the last thing I think it might be helpful for people to consider, as much as they may not want to accept this, the unfortunate sad truth is that fragrances are full of countless chemicals that are unhealthy for everyone. And earlier, I mentioned Dr. Anne Steinemann's studies. She offers a number of resources that attest to the dangers of chemicals and fragrance products on her website, www.drsteinemann.com. There's also a really excellent resource if a person truly wants to become educated about fragrance and health. It's a book by a nurse, Louise Kosta, and the title is Fragrance and Health. Very revealing.
[22:15] Greer:
Thanks for sharing all those resources. Yeah. Getting to know a little more about your experience and other people's experience with MCS definitely has shifted my view about certain things in my environment. Scents or chemicals that I thought were pretty innocuous, I'm kind of having second thoughts about, and I'm kind of looking at maybe I should just toss this one out and do something different going forward. So I really appreciate that kind of insight you've shared with us about what the risks are and how it impacts people's lives.
[22:49] Ms. Hurley:
Yeah, I appreciate knowing personally what I can do, but I would like to take a moment to mention a couple of things that Miss Costa details in her book because this takes it to a little bit higher level than we've discussed so far. Now, I don't know if they still do this, but casinos in Las Vegas have been known to waft some kind of a fog over people as they enter the casino. And in that fog, there are chemicals that are actually designed to disorient the patrons so they will gamble more. And they're fragrances. Okay? Fragrances are neurotoxins. So a neurotoxin can interfere with your brain activity. And another way, so basically, they're exposing people to chemicals without their knowledge or consent, which is something that Ms. Kosta points out in her book has been done in factories overseas where certain essential oils are wafted in order to increase employee production.
Greer:
Whoa.
Ms. Hurley:
Yeah. So that's medicating people without their knowledge or consent. And I had an environmental specialist dentist who was renowned for his specialty, but I happened into his hygienist's office one day and was floored by her wafting lavender essential oil in her treatment room. And I asked, what is this about? And she goes, "well, lavender relaxes people, and so I have this infuser that puts essential oil, lavender throughout my treatment room, so my patients will be relaxed." That's like death to me. And Louise Kosta points out in her book that's, again, medicating somebody without their knowledge or consent. So we can be aware of the problem with chemicals and fragrances anywhere we go, in addition to considering how we might choose something more healthy for our own bodies so that we can be supportive of other people. The sad truth is that fragrances are just not healthy for anyone. And that is a hard piece of knowledge for most people to stomach, because in our world, especially as women, there is a stigma attached to fragrances, which is I must be really special if this man will buy me a very expensive fragrance. And so that's kind of an unconscious mindset that you're up against when you tell someone fragrance isn't good for you.
[26:38] Greer:
Yeah, no, I understand what you're talking about and I appreciate the viewpoints you're sharing there. I'm thinking back to earlier this season, I interviewed an aromatherapist and she was quick to make the point that these essential oils are powerful and so they are for private personal use. Like, this is not something that you should be using out in public. And I think your point is really good about consent and it's essentially an intervention that someone has not consented to if you're using that stuff in a public space.
[27:14] Ms. Hurley:
Exactly.
[27:16] Greer:
Well, thanks, that's really helpful. And just to pivot a little bit, you do some really great advocacy and I'm wondering if you can share with us a little bit about your advocacy efforts to help others with MCS and especially in the housing realm.
[27:31] Ms. Hurley:
Oh, sure, happy to do so. Well, finding and maintaining medically safe housing is the biggest challenge for those of us with environmental illness. Allison Johnson refers to this as 'the elusive search for a place to live' in her book Amputated Lives, I mentioned earlier. So in this chapter she writes chemically sensitive people face a difficult struggle to find a place to live that will not exacerbate their health problems, a struggle that sometimes can seem almost overwhelming. Some people who are chemically sensitive are so reactive to the carpet or paint or gas heat in their living quarters or to their neighbor's use of pesticides or dryer sheets that they end up feeling lousy on bad days and half sick rest of the time. And unfortunately, she also notes that many people with MCS have committed suicide because they were unable to find housing that did not make them terribly sick. If you have MCS, single-family housing is the only option because we can't tolerate common grounds and building maintenance practices used in multifamily units, or fumes wafting from nearby laundry vents or fragrances that come from next door apartments. But single-family homes do not offer long term rental stability because if they're rentals, they've been purchased as an investment so they can be put on the market or maybe the landlord needs it for his family member. So a person with environmental illness commonly has to move often, and finding a home that is accessible to this disability, in other words, one that is free of any triggers, is like trying to find a needle in a haystack. And so this requires long and arduous rental searches and often results in homelessness. Most people who get MCS are soon disabled, losing their career and consequently having to depend on disability income, which is usually below the poverty guideline and near impossible to live on. Fortunately, HUD's Section Eight program offers rental assistance to low-income disabled persons. And out of my own struggle to keep multiple roofs over my head and from my experience with the Section 8 program, I was inspired to write a guidebook titled Guide to the HUD Section 8 Housing Voucher Program for Persons Disabled with Multiple Chemical Sensitivity. And since 2017, I've distributed approximately 800 complimentary copies of this guidebook. I also regularly counsel people with MCS about how to get their accessible housing needs met through the Section 8 program. And if anyone is interested, they can request my guidebook by visiting the chemicalsensitivityfoundation.org.
[31:06] Greer:
Thanks. That's really terrific. I'm always really inspired when people who have suffered a lot with their health then use what they've learned and their resilience and direct that towards the benefit of other people. So thank you for your work.
[31:23] Ms. Hurley:
It's a labor of love because my disability impacts my activities of daily living, but it has been one of the most rewarding things in my life that I'm able to help others.
[31:40] Greer:
I feel like we're already touching on it, but I'm wondering if you can share what are your central sources of meaning and belonging after all of the adjustments you've had to make for the sake of your health. You've talked about the reclusiveness and how disruptive it's been to your life.
[31:57] Ms. Hurley:
Yeah, well, having an illness that requires living in near isolation in a world that's increasingly more chemically laden, I did really have to dig deep to find meaning and belonging. One of my primary sources for living a fulfilling life is drawn from spending time in my garden. I'd have to say my greatest joy and inspiration is spending time with my children. And I also find purpose through photography and other artistic endeavors. The artwork is all time spent alone. And I truly have had to become my own best friend because I'm the person I spend nearly all of my time with. And then I will say also that since childhood I've had a reverence for the natural world. And having experienced MCS since the early 1990s, I've become more than an environmentalist. Rather, I now consider myself to be a human ecologist. And I welcome opportunities to promote human ecology endeavors as my disability allows, such as participating in this Femammal podcast. So I thank you very much for your invitation.
[33:35] Greer:
Oh, you're so welcome. I'm just so inspired by your life and what you've made of it and how much beauty you've brought into it, despite everything you've struggled with. And I would like to ask just one last question, which I ask everyone at the end of our interviews, I'm wondering what advice you might share with us on how we can listen well to our bodies.
[34:02] Ms. Hurley:
I am more of a head person and I wish I were more a body person. Having had MCS and also breast cancer, I think what I can share is that I have learned it's very important to trust in my intuitions that come from my body and to seek help and support from others who also honor my body's messages in my interactions about what's going on with me and in my struggle to find medical care. One of the main things I learned is if I come across somebody who discounts my feelings or my intuitions, I need to find a different healthcare provider and same with friendships.
[35:09] Greer:
That's great wisdom. Thanks for sharing it. And thanks for everything you've shared. I'm blown away by how knowledgeable you are and how ready you are to share your experience to make other people's lives better too. So thank you so much. I've really enjoyed this interview so much.
[35:27] Ms. Hurley:
Well, thank you. I appreciate the work that you do as well, especially on the housing front, of course, in addition to your podcast. And I love that name, Femammal. But the work that you have done on the housing front is phenomenal and I appreciate that.
[35:51] Greer:
Oh, thank you. Yeah, both are really fulfilling for me.
Greer:
If today's episode resonated with you, I'd love to hear from you. You can email me at femammalpodcast@gmail.com that's femammalpodcast@gmail.com. You can also follow this podcast on Facebook. Just search for Femammal podcast and you will find a community of people who are interested in living well in our bodies. And of course, I'd love for you to rate this podcast and leave a review wherever you download your podcasts. Until next time, be well.
