[00:00:00] Aaron Goodman: You're listening to the Chemical Sensitivity Podcast. I'm Erin Goodman. I often think multiple chemical sensitivity or MCS affects mostly older people. But recent studies show young adults appear to be especially affected by chemical intolerances. And research suggests that younger adults have the highest prevalence and maybe more likely than other age groups to develop the condition.

[00:00:28] And seem particularly vulnerable to the mental health impacts of living with chemical intolerance and the social isolation it can bring. It's pretty shocking and part of the story we don't often hear about today's guest. Abby Steves recently completed her PhD focused on MCS and its impacts on young folks.

[00:00:52] Abby's from Virginia in the US and grew up watching her mother navigate MCS as a former gymnast. Abby struggled to train and compete with the condition and these experiences led her to embark on a quest to find out how MCS is challenging and shaping many other young people's lives. I'll share a link to Abby's outstanding dissertation, which incorporates her own interviews with young people and draws on a vast body of scientific research.

[00:01:25] On MCS some exciting news. Please check out and share a link for the podcast's new webpage. Listen, do chemical sensitivity podcast.org. It's easy to share with any MCS skeptics in your life. Your doctor, employer, even family and friends. Listen dot chemical sensitivity podcast.org. Please subscribe to the podcast wherever you get your podcasts.

[00:01:52] To learn more, follow the Chemical Sensitivity Podcast on YouTube, Facebook X, Instagram, blue Sky, and TikTok. And as always, you can reach me at aaron@chemicalsensitivitypodcast.org. Thank you so much for taking time to speak with me on the podcast. 

[00:02:13] Abby Steeves: Thank you for inviting me. 

[00:02:16] Aaron Goodman: Would you like to introduce yourself to folks who are listening and watching?

[00:02:20] Abby Steeves: My name is Abby Leanne Steves, I recently completed my PhD in Psychology at Liberty University, and I'm going to be pursuing further research on issues related to MCS. 

[00:02:33] Aaron Goodman: Well, that's amazing. So you plan to continue on the research path? 

[00:02:37] Abby Steeves Yes. 

[00:02:38] Aaron Goodman: And always focus on MCS? 

[00:02:40] Abby Steeves :Yes. I would like that to remain, uh. Pretty central focus of my research going forward because I feel like it's something that not a lot of people in the psychology field are very attuned to, and I feel like it needs a lot of attention in that field.

[00:02:57] Aaron Goodman: That's really excellent. I'd like to revert back to this topic of psychology and how many psychologists respond and, and talk about MCS and deal with MCS later on. But for the moment, do you wanna let folks know about your own, perhaps your lived experience and your experiences growing up, your mother and your family?

[00:03:19] Abby Steeves: So when I was growing up, I watched my mom living with chronic Lyme disease. I also had. Chronic Lyme, so did my brother and my father. Many people in our family had chronic Lyme, and during my teenage years specifically, I watched my mom progress and become worse and worse with MCS, and she was unable to do a lot of the things that she used to do.

[00:03:46] Especially with regard to going to church. That was one of the things she really enjoyed doing. She was very involved in the church and she kind of had to lose the ability to participate in ministry as she previously had. And during my teenage years, I was actually a competitive gymnast and I competed for several years.

[00:04:08] And I felt like I didn't really completely understand what my mom was going through. I still wanted to have friends over and do a lot of fun teenage things, and so I was continuing to do gymnastics, and I really didn't realize it was affecting me personally for quite a while. And during my last year of gymnastics, I realized especially that I was starting to have severe back pain, and I lost flexibility for temporary moments of time.

[00:04:44] Even though I was a very, very flexible gymnast, I would suddenly be unable to even bend my back very far at all, and I was getting like swelling and aches in my joints and things like that. And then over time it's just progressed more and more. I think 2019 was the last year I did gymnastics. After that, it's just been that my world has shrunk further and further.

[00:05:10] And as a college student, you know, there wasn't much else to do, but. There was certain things that I wanted to be able to do and I couldn't do those things as well as I previously was able to. So basically at this point, it's progressed to the point that I can hardly leave my house at all without having severe reactions.

[00:05:31] I will lose the ability to speak and move. I will go into tremors and I will have. My heart rate go up as high as 180. It'll fluctuate. It'll go low, and then high and low, and then high, and that can progress for a very long time. If I don't even take antihistamines, those can really help me. Reduce the duration, but if I'm around something for too long, it doesn't even help as well as it should.

[00:05:59] So it's just really isolated me. And so that had a huge impact on the topic that I chose. 

[00:06:06] Aaron Goodman: I can imagine. And when you were younger, were there moments when your mother wasn't able to, to part, participate in your activities? For example, could she go to gymnastic meets or, or watch you train? 

[00:06:22] Abby Steeves: She was not able to go watch me at gymnastics.

[00:06:27] She kind of forced herself to go to the meets, and it was really hard for her, and it would take her days to recover. It was one of those things that she wanted to be involved in, but then at the same time, it took a huge toll on her health to be able to do it, and so. That's kind of where I'm at with a lot of things too.

[00:06:47] Like sometimes, like with my master's graduation, for example, I was able to do it, but then I was vomiting the next day and I was having extremely high heart rate and just in the bed very, very ill for days. I broke out in a horrible rash. Um, my tongue and my face and my hands swelled tremendously, and it was just like.

[00:07:12] You know, I got to experience the normalcy of, Hey, I went to graduation, but it was also very hard on me health wise in the following days. 

[00:07:22] Aaron Goodman: I can imagine. I wonder, was it the fragrance, the perfume that people wear? Yeah, gymnastics. I know there's a lot of hairspray and makeup. A lot of people put on a lot of fragrance for these events.

[00:07:37] Abby Steeves Yes. I think that a lot of it came from perfume on other moms at the gym that were watching. Even the laundry detergents on the gymnasts, leotards, they're a certain type of fabric that it doesn't easily wash out of. Then, like you said, makeup, hairspray, there's lots of hairspray use, especially at the meats, so that could all have an impact.

[00:08:00] Aaron Goodman: And were you having reactions to MCS. From the beginning of your gymnastics training ending in school? 

[00:08:08] Abby Steeves: Well, I grew up homeschooled, so I didn't really experience having reactions at school, but at gymnastics, it's actually kind of an interesting story. I thought that my aching joints and my swelling and all of that was coming from training so hard.

[00:08:29] I thought that when I was. Doing like tons of workouts that that was all it was. And I was like, oh, I must have been very hard on myself. I feel extremely sore today. But then it wasn't until after I ended my gymnastics journey. And I realized that I was feeling the same way without ever having trained at all, and I was still getting the achy joints.

[00:08:51] And it would be, especially like if my family tried to go to church, even if we tried to sit in the hall, I would feel my wrist just aching inside my back would start aching. I would start swelling and. I had done no training, so it became very clear what I was dealing with at that point in gymnastics and at church.

[00:09:10] Aaron Goodman: Did you or your family ever try to talk with others and help make it a safer space for you? 

[00:09:21] Abby Steeves: At gymnastics, I remember it wasn't really well known that I was dealing with it at the time, but there would be certain occasions where my mom would have to go into the coaches and say, Hey, Abby's not feeling well because she went to her orthodontist and they use a lot of strong cleaners.

[00:09:39] And she's been in the vet all day, but she still really wants to come to practice. She would just kind of tell him to take a lighter day for me on those days. I think at one point I realized that I was having reactions a bit, and I mentioned it to a coach and I think he stopped wearing cologne potentially after I had mentioned that I was sensitive to fragrances and such.

[00:10:03] So that helped because the first day was. Kind of hard on me at church. There was some attempts to try to request accommodations and suggest like a fragrance free policy. That did not happen, but we tried for a while to sit in a separate room and again. That can only help so much because you're still in a room and there can be cleaning products used in that room.

[00:10:32] People may have been in the room previously right before the sermon, so there's a lot of variables at play there. So it just wasn't sustainable in the long run. 

[00:10:42] Aaron Goodman: And I'm thinking about how it might've been for you in gymnastics. You know, there's a lot of complicated moves I imagine running very fast. One needs to be able to have clear thinking, right?

[00:10:56] And to be able to have control of one's body. And when there's cognitive challenges, right? If we have brain fog or we're dealing with other symptoms, I can imagine that must have been extremely challenging for you. 

[00:11:08] Abby Steeves: Yes, I remember at the meets, I feel like it was harder for me to perform at my best 'cause there was just this amplified amount of the different cleaning products and fragrances involved.

[00:11:21] And there was this one instance in particular where we actually had to stay away from home at a hotel and there was even a mold exposure and cleaning products use in the hotel. That we had stayed in the whole night before, and by the time I got to the meet the next morning, my eyes were so blurry that I couldn't see the numbers on the vault runway.

[00:11:45] And then I remember having so much brain fog that I asked the coach to tell me instead of just bending down to look at the numbers closer. I was like, can you tell me what number this is? I need to know where to. Start for my vault. Um, so it definitely impacted me. I just didn't really realize it as much as I do now.

[00:12:07] As I've gotten older, I've realized it more and more, and I've actually noticed the same in some of my participants. Um, there was just this difference with age that comes with, you know, growing older. You notice what's happening to you a little bit more. 

[00:12:24] Aaron Goodman: And I want to ask you a little bit more about that. I imagine your mother, because she had MCS, was she able to help you understand from a younger age, you know this, this is MCS, this is what's happening.

[00:12:36] And was it helpful perhaps for you to be able to label it, to know what was going on in your body and bind? 

[00:12:43] Abby Steeves: She definitely tried to tell me there were times when I was younger that I just didn't see it. And I also just. Really enjoyed doing the things I was doing, and I did not wanna give those up. So there were times when I kind of tried to cover it up and pretend that it wasn't happening because I just.

[00:13:04] I loved it so much. I wanted to keep doing gymnastics and I, I would hide my symptoms a bit 'cause I just didn't wanna give that up. And it did help in the long run, the fact that she knew so much about it. Eventually, especially after I ended up quitting, I realized that I was having these reactions to all the things there, even if it was more in hindsight, there were certain things that I did notice during.

[00:13:31] Experience, but there were others that I just brushed off a lot of times. 

[00:13:35] Aaron Goodman: I hear you. And you mentioned there came a time when you moved on from gymnastics. What was that decision like in your research, you talk about a lot of grief, a lot of grief that young people report experiencing with MCS. Do you want to talk a little bit about how that was for you?

[00:13:55] Abby Steeves: Well, it just happened that the timing. Lined up pretty well because I was aging out anyway and I was moving on to college. So it happened at what I would say would be a good time. Of course, it was still sad to end that part of my life. But I think what's harder is the fact that you go on and then there's nothing else.

[00:14:19] Like there was college and you know, that's fun and interesting, but there wasn't something. Like that social element was gone and there wasn't anything that I could really move forward and replace it with because I was progressing further and further with my own illness. It just wouldn't work well for me.

[00:14:43] Aaron Goodman: And do you want to talk about how it's been at college, you know, with MCS, I imagine you had. To be in shared spaces and classrooms and lecture halls and giving presentations. And how was that for you? 

[00:15:00] Abby Steeves: Well, actually, I realized my illness a little before beginning college, and I was able to do everything completely online because.

[00:15:12] It just would not have been possible for me to go and be exposed day in and day out. It literally wouldn't have been possible without online learning. So it's been a blessing to have the opportunity to do all of my college online. But of course there is like a missing social element. And that's something I heard, especially from a lot of my participants, is the, the college experience that they felt that they lost.

[00:15:40] Um. For me, I felt like it was a pretty good match for me. But, um, there's so many young adults that are very impacted by not being able to go to college in person. And many in my study even had requested accommodations and it was not possible to even accommodate, even as simple as allowing them to know who would be the roommate.

[00:16:07] Um, at a college dorm, like even something as simple as that would not be accommodated, and I thought that was very sad. There were times, I guess, when I had been exposed, say, at a family gathering or something important that I had to be at like a funeral and I would be reacting for days after or a medical appointment.

[00:16:31] Those were huge. If I had something just like a simple eye exam or a dentist visit. I sometimes had to request accommodations from my professors and say, Hey, can I have a deadline extension because my brain is so foggy, I can't even think right now? I would be in the bed for at least four hours and I would be vomiting, and I would just be so incredibly sick that I couldn't even look at a screen.

[00:16:57] So there were definitely times when it just kind of took the time. Away from me that I needed to study. So that's why I also had to limit my engagement, like any sort of social, anything. I had to completely limit that kind of stuff during college because I couldn't afford to get a bad grade because I'm reacting for the whole next week after that one hour little thing.

[00:17:23] So even my medical visits had to be pushed to the back burner on some of those things. 

[00:17:28] Aaron Goodman: I understand.

[00:17:41] Abby, we often think of MCS as an illness that affects mostly older people. But in your research, you point to recent studies that clearly state. And I'm gonna quote you in your paper, your dissertation. Young people or rather young adults have the highest prevalence of chemical intolerance and may be more likely than other age groups to develop the condition and have shown increased vulnerability to mental health effects of chemical intolerances and forced social isolation.

[00:18:16] And you cite a lot of scholars. In this paragraph, 

[00:18:20] Abby Steeves: I think that there's some different reasons for why we haven't seen as much research on young adults. It was very interesting to me in doing the study of my own on young adults specifically, it was initially hard to find participants and. That was because I was initially putting them out to social media groups and I was getting a lot of feedback from middle aged and older adults with MCS, and they were saying that they did not realize that they had MCS until they were much older.

[00:18:55] The symptoms were there, they were telling me, but they just hadn't put the connection together of what was causing the symptoms. So they hadn't really matched up the trigger, and I think that's something important to mention. It's also interesting that a lot of the studies that I was looking at, many of them require a diagnosis in order to participate, and that knocks out a lot of young adults who haven't yet had the opportunity to find a doctor who understands the illness and can give them that diagnosis.

[00:19:34] And that's something I heard from several participants. They were, you know, experiencing many of these symptoms, but they had not yet found an understanding doctor who was able to give them the formal diagnosis. And so. That was one of the things that I did during my study was I did not require a diagnosis, but I did put a lot of screening to screen out any that were not experiencing the symptoms of MCA.

[00:20:02] Aaron Goodman: And do you want to talk a little bit about your study? What were you really looking to find in your research? 

[00:20:09] Abby Steeves: Well, the main topic of my study was to focus on grief, loss and coping in young adults living with chemical intolerance, and I kept it intentionally broad with the term chemical intolerance because chemical intolerance can actually.

[00:20:28] Occur alongside many different diagnoses. It can occur with mast cell activation syndrome, multiple chemical sensitivity, and even asthma, autism. There's many different. Things that people can have that can occur with chemical intolerance basically. So I didn't want anyone who's significantly impacted to be left out, and so I used a life impact scale and if they scored in the high range of life impact of chemical intolerance, they were able to qualify for my study.

[00:21:03] Aaron Goodman: And the purpose was to really find out about the day-to-day experiences, social isolation, grief, which can be longer term among young people. Is that right? 

[00:21:15] Abby Steeves: Uh, primarily focused on the grief and loss experience. 

[00:21:19] Aaron Goodman: Mm-hmm. 

[00:21:19] Abby Steeves: In my study and how they coped with that grief and loss. It's mainly focused on illness related grief and loss has been studied.

[00:21:28] For other illnesses, but has not yet really been covered in the context of MCS chemical intolerance. 

[00:21:35] Aaron Goodman: And you were sharing previously, you were, you wanted to share a, a quote that was quite telling from a participant in your study shared with you. 

[00:21:43] Abby Steeves: There was one particular quote that I just feel is so relevant to this conversation.

[00:21:49] This one participant told me, most people are fine seeing you suffer and be really sick, or they know what you're experiencing and they will not even minorly inconvenience themselves to spare others immense harm. They're really not as willing to be helpful as what previously thought in the majority of instances, and I think this just speaks to the shattered assumptions.

[00:22:16] That can occur for people with MCS. It's not just, you know, they can't do this thing anymore and deal with that, which is hard in and of itself, but it's also dealing with other people's reaction to even mentioning their illness. It's such a relational illness. 

[00:22:37] Aaron Goodman: Do you see this as a form of stigma? You know, it's misunderstood and people are judged, whether it comes from a lack of awareness or prejudice.

[00:22:47] Abby Steeves: Oh, absolutely. I saw this in many of the participants. There were some who had very good experiences, very positive experiences. It tended to be the ones who were most significantly impacted. By the illness who were facing a lot more of the stigma. I imagine this is because their illness had gotten to a point where it's not something they're able to really hide anymore, which is where I'm at with mine.

[00:23:16] It's just something that you're kind of forced to express to people, even though they may not understand because it's for the sake of your health and. It gets to a point where you can't really just tough through it. Sometimes you can, but sometimes it's just not possible. 

[00:23:36] Aaron Goodman: Mm-hmm. 

[00:23:36] Abby Steeves: Without suddenly beginning to experience the symptoms and have to leave or just, you know, not be able to participate in the way that a person normally would.

[00:23:46] And so it, it just really impacted a lot of the young adults in my study that. They, they were losing connection. That, that was such a key finding from my study. One of the main losses that was discussed by the participants was the loss of connection. And this happened for multiple different reasons. Um, one was that people didn't understand.

[00:24:11] Another is that they didn't just not understand, but they didn't believe it. They said they were lying, um, about their symptoms, which is awful. And then another reason is that they couldn't relate to other people's sense of normalcy. Like, you know, other people, other young adults, what, uh, typically happens in the lifespan, they couldn't relate to those basic life experiences of normalcy.

[00:24:41] And so that also made it hard for them to connect. And so, uh, when I looked at. Previous research on young adults with chronic illness, sharing their experiences with others versus the young adults living with chemical intolerance. In my study, it was very eye-opening to see that it seemed like the driving force behind.

[00:25:05] Not really wanted to disclose their illness was the fear of offending people because they, they were just afraid that they're going to offend someone because it's not like some other illness where it doesn't really impact the other person. This illness is something that. You know, it, it's something people are wearing on their bodies, on their clothes, um, in their hair, on their face, in their makeup products, all over their house, the personal products that people use.

[00:25:38] And so it can so easily come across as offensive to advocate for these basic health needs. And so that was one of the big fears is like that if they disclose. Then they're going to be accidentally offending people and it forced them in some cases to have to disclose when it's not really in their personality to do so.

[00:26:01] Aaron Goodman: I imagine for young people it may feel like a burden or extra complicated, and as you mentioned, who, who wants to really be using emotional energy to do these things? 

[00:26:16] Abby Steeves: Right. Right. And that was one of the things that the young adults were also saying in my study, is that they had to set boundaries about who they would even share with and.

[00:26:28] You know, really be intentional about surrounding themselves with people who understood their condition, because it was just draining to them to have to keep explaining and explaining to other people to try to get them to understand these things they, they felt most comfortable around the people who were understanding of their condition and were accommodating to them.

[00:26:53] Aaron Goodman: And you talk in your research about identity shifts and movement from who I was to who I am now and changes in, in how one thinks about oneself and purpose and self-worth. Did any of your research collaboratives talk about this shift? 

[00:27:13] Abby Steeves: I had one in particular mention that she was really struggling after becoming housebound because of MCS to like, identify with these core identities that she held before.

[00:27:29] For some people it could be the sport that they were involved in. Um, for others it could even be like their role of connection to someone else like that. I'm so-and-so's friend, or, you know. Things like that, like just how they relate to others, um, in relationships and in sports and just other things like that.

[00:27:53] There were these pieces of their identity that they felt were lost, and it was also a personality traits like. They wanted to be more spontaneous and not have to plan these things out. Like, you know, you have to plan out, oh, can I afford to have a reaction and be suffering for a week? Or can I just do this fun thing and accept this invitation today without even thinking about it? 

[00:28:21] Aaron Goodman: There's so much planning, isn't there when you have MCS?

[00:28:23] Abby Steeves: Yes. And that's what I kept hearing over and over from my research participants was that they just wished that it. They didn't have to plan that. They could just be spontaneous and do the things that they wanted to do without thinking about them.

[00:28:40] Aaron Goodman: That makes total sense. Did you hear from any of the research collaborators that they had support from their families? 

[00:28:49] Abby Steeves: Yes, and this was something that actually surprised me because in previous research I was seeing that like a lot of people just didn't have that kind of support. And so when you're looking at this group of young people, these are young adults, many of them were actually still living at home.

[00:29:08] So a lot of them, not all of them, but a lot of them did have very supportive families and. This is such a great thing that they have that support. But I also could see how it puts this interesting burden on the parents, because when you're dealing with a child that has MCS, they're, they're grown up.

[00:29:34] They're an adult now. They're past the age of 18. You know, the average age in my study was 26, and so. These young people are at a stage of development where they're trying to establish their sense of independence, and they're learning to trust themselves and realize who they are and what they can contribute to the world.

[00:29:58] And sometimes, you know, as supportive as parents may be in trying to protect their young adults' physical health, it can also be. Like a difficult balance, I'm sure, when it comes to also letting them kind of develop their own self-trust and independence while at the same time protecting their physical health.

[00:30:21] Aaron Goodkan: Do you find that young people and perhaps yourself find, uh, community and support and understanding with other young folks online? 

[00:30:30] Abby Steeves: I think this can be a good source of community. I was hearing from a lot of the participants that social media had its pros and cons. Basically, there were some pros in that they were learning about their illness, they were learning these pieces of advice, things that would help them.

[00:30:51] But at the same time, there's also these pitfalls with social media where you see a lot of negative content. A lot of depressing content out there, and even some arguments and people. That may feel like their treatment works for everyone else, and that can kind of cause these arguments in these groups.

[00:31:18] And a lot of tension to the point that, uh, sometimes it was better for the young adults to just step away from it for the sake of their mental health because they didn't want to surround themselves with that kind of tension and negativity. 

[00:31:33] Aaron Goodman: And where, Abby, where do you find support and community, uh, and understanding these days?

[00:31:41] Abby Steeves: Well, um, my husband is very supportive and his family is very supportive. My parents are very supportive. Um. I have some friends that are very supportive to me, so that really helps. And you know, for me, a lot of my friends are online. I've come to realize that I'm probably not gonna meet many more people in person before I meet them online.

[00:32:07] Which is interesting to kind of think about, but I've met some wonderful people online and I communicate with them here and there, and I think that it's really good when you can have that kind of support, even though it's. At a distance for people with MCS, it can just be really helpful to have that online connection because you don't really have to worry about all of the in-person stuff that happens with trying to navigate avoiding so many different things.

[00:32:44] Aaron Goodman: Abby, as you move forward with your research focused on chemical intolerance and MCS, what are some of the major questions that will be motivating you? 

[00:32:54] Abby Steeves: Well, one of the things that I'm really interested in studying in the future is the topic of living with chemical intolerances and the in the context of trauma, because.

[00:33:11] There were so many things that were brought up in my study by the participants that seemed to really overlap with the concept of trauma and things like shattered assumptions and just kind of like the emotions that went along with it. There was even two participants even mentioned having A-P-T-S-D diagnosis, so it was very interesting.

[00:33:37] Just to hear how traumatic it can be, especially as a young adult. One of the participants had lost connection with an entire side of her extended family, and I feel like this is common. 

And that can be very traumatic to just completely lose touch with people In your own family, there were people that lost friendships and it's just.

[00:34:03] Yeah, all of these things, like there's so many different losses that can really be perceived as a trauma to an individual. 

[00:34:12] Aaron Goodman: And your research is in the realm, the field of psychology. Perhaps looping back to where we started this conversation, do you have any thoughts on how many psychologists view people with chemical intolerance, we're often told by clinicians that it is a psychological disorder, which is something I push back on. So anything, any thoughts on this topic is our welcome. 

[00:34:37] Abby Steeves: Well, I completely agree. It's absolutely not psychological, and that's one of the things that really pushed me to do this research in this area and in this field, because I have seen it.

[00:34:53] Considered a psychological thing and it's just not true. Uh, these people have very real experiences and I don't understand how you can call it psychological personally, but I think that there's such a need for. Especially when you're dealing with people that have such a significant amount of loss in their life.

[00:35:22] There were 85 different losses expressed by the participants across the 13 interviews that I did. And when you're experiencing that much loss, ongoing loss in your life, you need to be able to have a therapist that you can go to and actually discuss this and. Not be met with having to explain away.

[00:35:46] Explain away. Why you're, what you're experiencing is a physical illness. Mm-hmm. Should not be the reality for anyone who's seeking mental health care. And unfortunately, that sometimes is the reality. 

[00:35:59] Aaron Goodman: Mm-hmm. 

[00:35:59] Abby Steeves: Several participants did have therapists who were very understanding of their condition, which was really encouraging to hear, but in previous research I've seen that's not always the case.

[00:36:11] There's a lot of. Counselors and mental health professionals that have done a lot of emotional harm to people in this population by kind of attacking them and saying that their illness is all in their head is the common thing that's said. Mm-hmm. And I just don't think that that's very helpful and I think it's incredibly harmful and can really hinder people from even attempting to seek medical, healthcare, mental healthcare.

[00:36:43] Aaron Goodman: And when you talked about trauma, I thought it was really interesting. You mentioned that you also don't believe that MCS and Chemical Intolerance a psychological disorder, and yet there are some. Researchers who continue to further this, what I think is a false argument, and some of their claims are that, you know, MCS or Chemical Intolerance comes out of, or in response to trauma to childhood trauma or PTSD.

[00:37:11] I don't think that's true. A lot of people have trauma and don't have MCS. Absolutely. 

[00:37:16] Aaron Goodman: What do you think about this? 

[00:37:18] Abby Steeves: Well. I don't know that I know enough about that area to truly speak on that. 

[00:37:25] Aaron Goodman: Mm-hmm. 

[00:37:26] Abby Steeves: But I, I tend to completely agree with you that it's, it's not the result of trauma, if anything at all. It could be that experiencing trauma may cause additional stress on the body, which can make the illness more likely to develop given certain genetic factors.

[00:37:47] I came across a very interesting research article when I was doing my literature review and. Pointed out that they found four protective genes against chemical intolerance and four particular genes that can increase your risk of developing chemical intolerance. So perhaps in a subset of people who've experienced trauma, maybe that additional stress on the body made it so that those genetic factors came into play and.

[00:38:21] Kind of the environmental working with the genetic component produced a greater likelihood of developing the illness. 

[00:38:29] Aaron Goodman: That makes a lot of sense. Something a lot to think about there. Perhaps as we wrap up, do you think there's enough research on MCS? 

[00:38:37] Abby Steeves: Oh, I think that we can always use more. There's so much already out there that it is very convincing to me that it is the result of like.

[00:38:49] Biological factors, genetic factors, exposure to toxicants in the environment, things like that. But I think there is still a need, especially in regards to people's lived experiences with the illness, because I would love to see more qualitative research that really dives into people's lived experiences with the condition and.

[00:39:14] Just kind of how it impacts them in their day-to-day life and how it impacts them psychologically. Because a lot of the time the research, like you pointed out, is under the assumption that the illness itself might be the psychological part, but I don't think that's true, and I think that there needs to be more research on how living.

[00:39:41] In this way with this illness can actually be the cause of the mental issues instead of the other way around. 

[00:39:50] Aaron Goodman: And I also think that, and I experienced this, that certain chemical products, uh, some fragrances that I am exposed to. Periodically cause an anxiety reaction. And there is research that shows that, for example, Gulf War veterans experienced, uh, psychological conditions when exposed to certain chemicals.

[00:40:15] So I think there's something about the inherent nature of the chemicals that causes anxiety. Yes, I think that could very well be possible. Um, there, there's also, um. Something to be said about how it impacts a person's mood in and of itself to be exposed to the chemicals. And you think about people who are intoxicated, say with alcohol or you know, something, some other kind of substance and what kind of emotions that produces when they're intoxicated.

[00:40:50] And you know, I've. Experienced having certain types of exposures that will produce an experience very akin to being intoxicated. And I think that other people have also mentioned set that kind of experience as well in my study. So it, it would be fascinating to look further into that type of thing too, to just kind of compare exposure to chemicals with.

[00:41:19] Say intoxication with a certain substance and what a person's reaction is. Because I would say that certain people have a certain threshold of the amount that they can tolerate of chemicals. Just like people are able to tolerate a certain amount of alcohol. Absolutely. I certainly experienced that too.

[00:41:41] Aaron Goodman: Yeah. Is there anything else you'd like to add before we wrap up? 

[00:41:46] Abby Steeves: The only thing that I think is also important to share is the concept of living losses. This is really important to address because. When you think about loss, a lot of times we think about loss in the context of death and with living losses.

[00:42:07] They are not only non death related, but they're ongoing losses. And for a person who lives with a chronic illness such as this, it's not just that you're losing all the things associated, like say, okay, I can't use any of these products anymore. You're experiencing a loss there, and then later you're met with another opportunity that you might like to experience and you lose that.

[00:42:37] And then say a month down the road, you lose another experience, like say a job opportunity. And then further down the road, you lose the ability to go to this family gathering. You lose the ability to accept a friend's invitation. There's so many different losses and they're not. Occurring simultaneously.

[00:42:57] They're occurring over time, over the course of a person's life, and they're just so ongoing, they never end. So that's what the concept of living losses looks like for someone with chemical intolerance. 

[00:43:11] Aaron Goodman: I imagine that's something that you continue to experience. 

[00:43:16] Abby Steeves: Uh, yes, uh, especially as I begin like searching for jobs and things like, there's just like such a limited amount of things that are possible for me.

[00:43:27] I'm looking for strictly remote work, and so it's difficult in that regard, but there's also just the social things and the different things that pop up. Like, I would like to be able to go do this certain thing. But I can't, and that's what I heard from so many of the participants in my study was that, you know, it, it just kind of shed light on the fact that it's not a choice.

[00:43:55] It's not a choice that you're just avoiding so and so because you don't wanna see them. You're avoiding so many other things in your life. Like I said, there was 85 different losses, and that really speaks to the fact that they just wanted to be able to do these things and. They were experiencing such an emotional toll because they couldn't, and some of them felt jealous of healthy people for the fact that they could do these things still, and some of them felt betrayed by their body.

[00:44:30] They were very lonely and isolated, and dealing with all of the limitations just kind of made them feel trapped. They were frustrated by the lack of understanding from other people, and it made them depressed and even anxious about what their future would look like living with this. And so it also really showed that it's not a choice in the fact that so many of them actually tried to hold on.

[00:45:00] To doing the same things that they were doing previously. Like they would be like, oh, I can still do it if I do this one little adjustment. Those things can only work for so long, and then you end up potentially losing that too if it's severe enough. 

[00:45:18] Aaron Goodman: You've been listening to The Chemical Sensitivity Podcast.

[00:45:21] I'm the host and 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 listen dot chemical sensitivity podcast.org.

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