Episode 3: Helping Others Understand MCS with Roselle O'Brien

Aaron Goodman  00:05

Welcome to the Chemical Sensitivity podcast. It's a podcast that amplifies the voices of people with MCS and highlights emerging research about the illness. In this episode I'm speaking with Roselle O'Brien. Roselle is a Licensed Clinical Mental Health Counselor based in Massachusetts in the United States. She's deeply dedicated to providing support for those whose lives have been impacted by Multiple Chemical Sensitivity. 

Aaron Goodman  00:31

She has been a medical professional for over 30 years as a licensed nurse and as an educator, psychotherapist and creative arts therapist, as well as a musician and writer. Roselle combines all of her skills in a holistic approach to care, health, and wellness. 

Aaron Goodman  00:48

For more information about Roselle's counseling and work, please visit her website counseling@sella.com or just Google Roselle O'Brien counselor. I'm also posting the link to Roselle's website on all platforms where you get your podcasts. In our conversation, we talk about what it's like for people with MCS when we're dismissed and misdiagnosed by medical professionals. 

Aaron Goodman  01:13

We also talk about how to ask family members, friends, house mates, and others to accommodate us. I really appreciate Roselle's compassionate approach to working with and supporting people with MCS and her insights about how we can communicate with others. And above all, how we can put our health first. I hope you enjoy the interview. 

Aaron Goodman  01:34

Well, Roselle, thank you so much for taking the time to come on the podcast. And I've been really looking forward to speaking with you, you have a lot of wisdom that I think listeners are really going to benefit from. So maybe we can start with what is it like for people with chronic illness? And I think let's talk specifically about MCS, when people in their lives don't believe them is that something you you see a lot in your practice?

Roselle O'Brien  02:00

It's still very common. Sometimes the people who are closest to an individual are skeptical. Flat out think they're mentally ill, don't believe it. That's not always the story. But it's--it's very real, and a part of it. And it's good that you mentioned Chronic Illness, and then when it's a Chronic Environmental Illness with all the Chemical Sensitivities and stuff, those are two very different things. And Chronic Illness the expectation is it's diabetes or a heart thing, and this is what you do. And if there's a problem, if someone's having symptoms, it's because they're not following the sugar free diet or, and this doesn't fit that mold at all. And then it's a challenge because doctors are not trained to recognize it--to know what's going on. And they shuffle them off to therapists who aren't trained. 

Aaron Goodman  02:45

So I think everybody, most people, virtually all of us who have MCS experienced this on some level and in your practice, how do you see it? And what's the impact? How does that affect a person who has has this belief, or the lack of knowledge or all of the above?

Roselle O'Brien  03:02

I think all the above, like, let's just say one's friends, or family or partner is skeptical, and even gaslighting them. What does that do to someone who's struggling with MCS, it creates a health situation for them. When I work with clients, my typical straight out focus is you're not wrong, you have something. It is real and strengthening that self belief and self trust, because it's part of our culture that the doctors or the medical profession, they're sort of on pedestals. And we just go yes, yes, we're not really 100% that that we are consumers, and that we know our bodies, and that we are living in our bodies, we are experts in ourselves. 

Roselle O'Brien  03:44

And just because you can't find the right label doesn't mean that what I'm having happen to me isn't real. So we do a lot of supporting of that, and that people need to start by educating themselves about what's going on, because it's a long road of--not do it yourself, because people aren't alone. But it's so individualized that you need to learn what your tolerances are, what you can eat, environments you can and can't be in, and how to just tell people no and yes, and so believing in you becomes secondary to staying healthy. And in the end, what you focus on is the people who do believe in you, and the ones that don't, it hurts but you can't stay in that space. So I work with clients to say yes or no, yes, it hurts but let's focus on who does believe in you. And the thing--you know, what you're doing to feel better and stay healthy.

Aaron Goodman  04:34

Yeah, and even though the research shows that millions of people have MCS, it's rare, I think for folks to actually meet a clinician who can diagnose and is willing to diagnose with MCS and I know for myself that's very painful, to be dismissed. And so we know because we go to a doctor hoping for help and when we're dismissed or misdiagnosed, what does that do to a person?

Roselle O'Brien  05:01

It does a lot, it makes them doubt themselves in and these array of reactions are systemic. If they're lucky enough and haven't been given a bunch of inappropriate medications, and they're already exhausted. And with brain fog, and all the other fatigue and everything else, and trouble with eating and trouble with sleeping, and all of the symptoms, it just eats away at people. 

Roselle O'Brien  05:27

So I come into contact with people at different stages of their journey with this. It's hard because it's a lot of work for each individual person to totally revamp their lives while they're living it and mourning the loss of the life that they were living in the midst of losing it. It's just horrible. 

Roselle O'Brien  05:43

So some of it is is like, as a therapist, my awareness is what do they what do they need to have physically in their environment in place to feel better, to not be in this particular state where sometimes they can't think or sometimes they've been booted out of their housing and they're living in a car? At best and and it's winter? And what do we do? And where do I go and why--I can't work and nobody believes me? And it's not easy, because sometimes it's like, how much is each person wearing? How far are they willing to go to remove the things from their environment to which they react, right? This is this colossal amount of change, and throwing everything you own? Well, if you have to, are you, you know, can you do that? And some people aren't able to.

Aaron Goodman  06:24

And we're also, because we depend on others for our well being, right. We don't live in isolation, right? Whether it's our neighbors, or people, our families and friends, roommates, etc. Right? And so you've talked about the challenges of not being believed? And are there any, perhaps any practical suggestions you might have? For folks when they need to be believed? They want their people in their lives to believe them? What do we do?

Roselle O'Brien  06:55

Sometimes it's in how you present that information. I suggest that I share with people, lots of websites that you can't argue with. It's not like somebody's personal blog, but medical stuff, hospital stuff, and not just in the United States, internationally, wherever I find that the the accurate information is there. 

Roselle O'Brien  07:15

And don't worry about whether they're going to believe you or not, keep sharing it, just keep sharing it and don't change what you're doing. Don't stop trying to teach them, don't stop trying to show them, people are going to be resistant to come along with it because they get scared is what does this mean? How is it going to change? Isn't it more than just changing your laundry soap so you can hang out with this other person, even though that's huge, that people get scared. It's like seeing someone that you care about having their whole universe rocked? What if something happens to me. So it's almost like I don't want to look at what's happened to you, not because I don't care about you. But because I'm so scared of something happening to me that I can't manage.

Aaron Goodman  07:50

That's really important to address that there's multiple parties involved in these, these relationships, right? So someone with MCS has needs, but the other person too, has their own stuff. Yeah, and you're imagining that they can be triggered or feel fear around it. 

Roselle O'Brien  08:07

And not about the person with it. But about their own fear, everybody has a fear about being helpless. Now it isn't always about death. That's it, but it's just like helpless or not knowing what to do being completely out of a lot loss and out of your comfort zone. And just--because they hear even if they disagree with you, they're hearing the doctors don't agree that you don't know what's going on. And it's it's scary to hear about and some people will just shut you down because, you know, shoot the messenger because they don't want to hear the message. Because it just hits their scared places too. 

Aaron Goodman  08:35

You mentioned that, you know, we can share information, whether it's online from credible good sources. And yet people point to studies that that claim MCS is a mental illness. It is an anxiety disorder, for example. And they use that as a foundation for denying a loved one's illness. And we know that can be so painful, right? And so faced with that sort of skepticism and to use the word gaslighting again, or just feeling so invisible and not seen and dismissed and often having to live in very difficult circumstances will be more willing to change. What can you do aside from just leaving the relationship? Because we're already so drained? Do we have to continue to ask for change? What do we do?

Roselle O'Brien  09:24

If the focus is on, their number one priority is maintaining their optimum health. Whatever that may be. And it may sound kind of black and white or harsh, but it can't be otherwise it's got to be you and your health comes first and people are either going to want to be a part of that or they're not going to be able to it does more harm for the person to be angry with them. It's pain and loss but you kind of have to go okay, well they're not able to come here about this and not change your trajectory. 

Aaron Goodman  09:59

And I wonder If it's important to start the process of communicating early, I mean, I'm--part of a Facebook group that I'm--that I'm on. I've read stories of people with teenagers, for example, and they hesitate to call it out and ask for change. And I know even in my own situation, I had a house guests, and prior to them coming to stay with my family, I thought I was being very clear, you know, I have this MCS and we're happy to provide all your products, please make sure you don't wear anything scented, and yet they came and they continue to wear that product. And by that time, they were already in our house, it felt like too late, or I felt too uncomfortable in that moment to say something.

Roselle O'Brien  10:41

It's hard to have it overridden in your own house like that about your health. I'm so sorry. 

Aaron Goodman  10:45

And a lot of people are right, it does. It happens in our own homes, whether it's gas, you know, we don't always live on our own. So even with neighbors, you know, so is it extra hard in our own homes? 

Roselle O'Brien  10:58

Many times. It is sharing space with people. I know people who just do not let visitors come in, stay in their home, they can come over have dinner, whatever you are not, you are not staying here. Some people can be quite rigid about if you're going to come into my space, you do not use particular laundry soaps do not use perfume, do not use particular anti perspirant, for instance. Things that they know will make them ill and just say if you can't do that, that's fine. You can Zoom, FaceTime, you know, whatever. Just know, I can be flexible, but not with my health, only to a point. But it's hard when you're sharing the space with other people. And they are reluctant to share changes that need to be, they just need to be for a person's health. 

Aaron Goodman  11:40

And yet some people do report that people in lives are willing. And isn't that wonderful? Do you see that when people really are willing, whether they believe it or not? 

Roselle O'Brien  11:48

Yes, and it's hope inspiring. It's not quite the majority of people, I--hope springs eternal. But it's there's enough that I've noticed that there are people that, like you said, even if they don't really 100% believe it, but they will respect what your health needs are, ah, but you can't always be catering to how people need to be fed reality, because that's so draining of your energy. And it's stressful. And stress makes all of these reactions worse. So some of it is is really just about knowing 'I can't go there because I don't want to compromise my health like that.' 

Aaron Goodman  12:24

And that takes a lot of inner strength, you know, whether it's not going to family gatherings or not going to religious gatherings, right? People can't go to the places they can't partake in things and be involved in community. 

Roselle O'Brien  12:40

Not in that way. A lot of losses. It's a lot of grief and bereavement and a lot of deaths like that. But that doesn't also mean that there aren't ways to still somehow. And it's not the same, but it's also knowing who is supporting you who's like totally right there. And if they're going to to a church or religious thing. It's like hey, can you bring your iPad? Oh, we can FaceTime it. So so I can hear what's going on. So there's, there's luckily, devices work like that for people who can tolerate them. Because not everybody can tolerate devices. 

Roselle O'Brien  12:40

And it's finding those, even if it's two people that get it, can make all the difference because they understand that just how you wake up in the morning is not how you're going to feel four hours later. And some people don't understand the difficulty of making plans. And they'll get annoyed and be like, well screw you, I'm not trying anymore. You said we were gonna get together six times in a row. And they don't understand that other people like oh my god, you don't feel good, we'll just do this later. 

Roselle O'Brien  13:38

So it ends up being how we--meaning we give to things and how we internalize it. And who's driving this bus here. And each person has to be the gatekeeper and driving their own bus. And it's, especially in the beginning, it's a lot to get used to. But you do get to get used to it. And the more you can do that, the more consistently, okay, from reactions, you can feel, that doesn't mean they're gonna go away or that you feel great all the time. But you create almost like like a safe haven in your home if you're able to. So you still have to go out and go to supermarkets or whatever, it's still toxic, but you come home and shower and at least in this space, it's not so bad. 

Roselle O'Brien  14:14

And as much--so it's, it removes a lot of spontaneity out of one's life many times, but at the same time, it's not 100%. And it's like within that sometimes it's like, okay, you woke up today and you feel like let's do something today and people are like cool, let's do it. But you end up continuing with the people who are willing to continue down that particular road of things and other people see that you don't care or they don't care, but they can't be the focus and they end up just continuing to live their lives and that's okay. 

Roselle O'Brien  14:41

And you miss them but you're working on rebuilding because you can't go back to not being sensitive and not reacting so some of it really is about okay well I'm still here with goals and dreams, how do I morph them so I that can still make them happen? So it may not be in person like some of my clients are performers and it's sort of you know, it may not be or it can be in person. It's like if you're really rigid for as many days leading up to it as long as people know if you can say, hey, not--try not to do these chemicals while I'm here. And if you can connect with doctors that do non pharmacological stuff, who will talk about diet who will talk about histamine, there's more and more of that. I see a lot more of that and a more recognition of stuff coming from that end of things and from the medical profession, that kind of begrudgingly having to pay attention, but it's all of the people, the patients, the herbalists who are just not stopping. 

Aaron Goodman  15:35

And I wanted to just take a step back, if we could, and ask you, how did you get into this, this work?

Roselle O'Brien  15:41

My mother, she had horrible Chemical Sensitivities to everything. And so I grew up with this awareness. She was a social worker. And she worked a lot in hospitals, she used to bring home masks from the hospital, the cloth ones, but she could only use certain laundry soaps. She would react to air conditioners to heaters, people thought she was crazy. And she just went, I don't care. This is what I have to do to feel good. And that's it. My mother was fierce like that, just like she was just absolutely this is how it had to be, do not put your perfume on because I had two systems, it was perfume, makeup, showers, you know, and it was just like, get out. And we knew not to do that and not to have if our friends came over, no perfume, no smells.

Roselle O'Brien  16:23

I don't know what it was. But we knew certain clothing, types you can't wear because my mother will get sick. And this was just the rules. So it wasn't easy. But then as an adult and as a--as a therapist and hearing this and it's like, and I would have conversations with my mother. And it was like, wouldn't it have been a whole different world if there had been a name and a diagnosis other than she's crazy, go to a therapist, and that's what they did 60 years ago, and that's what they're still doing. And there's so much more information. And she was like, no, because I didn't listen to them. She was like, I knew what I was feeling. And I just did what I needed to do. And that was it. Sometimes doctors would tell her to go see a therapist, and she'd go and they'd prescribe her pills. And she's like, I'm not taking any of this. And she would never fill a prescription. But she would go to please her doctor just like that she was jumping through the hoops. But even then she's kind of stopped because going to hospitals and demand a doctor's office made her feel sick. 

Roselle O'Brien  17:09

It was already kind of there my whole life. So then seeing this, it's like, oh, I get this. And I get that this is hard. And it's only put my--my mother in a whole different light having the now medical knowledge, such as it is.

Aaron Goodman  17:21

Things have really advanced, there's more research. And yet, it's still hard to find a clinician who does recognize and validate and diagnose. But I think one of the things that I'm hearing you say is that you saw in your mother that that self reliance that I think that you talked about, right that that's really what you sounds like you're encouraging folks to really practice is being that source of strength as much as you can for oneself. I just wanted to share that in the last few months. 

Aaron Goodman  17:51

I've started wearing a mask, a half respirator to the grocery store, and even to walk the dog and it's something they never did. I think it takes confidence in a sense really to do that takes--it takes guts right, to say

Roselle O'Brien  18:04

Yes.

Aaron Goodman  18:04

People are going to judge me, they're going to look at me. But these are my needs. And that sounds like that's what you saw your mother do. And be very clear with people around, this is what I need as much as possible. And it's very difficult to do that and be met with such skepticism.

Roselle O'Brien  18:21

And it doesn't have to be confrontational. I have also found that and I tell this to clients, a lot of it can be how you coach it how you frame it sometimes, like you don't have to go down the whole Chemical Sensitivity road, you can say I have really bad allergies, people now understand at least a little bit about allergies. So people they may not understand it, but they get if you say I have severe allergies, and sometimes it's like, you know, it's like to peanuts or someone has a bee sting, and they were unconscious on the ground in 30 seconds, unlike that, or however it is for them. And people will kind of go okay, and that's not scary. For some reason, allergies aren't scary. Isn't that weird?

Aaron Goodman  18:56

I feel like it's a good thing. And my hope is that the research will progress, and that there'll be more and more education. So we can say, we can really call it what it is. 

Roselle O'Brien  19:06

And know what it is that we're calling and have everybody agree maybe it's for my mother, but I very much like this is what it is this and it's a medical, physiological physical thing that's happening. It's not a mental illness. It's hard because there, it's--it includes brain fog and mood, everything is impacted. So a lot of what I'm focusing on is teaching the therapists, because that's where doctors are still shuffling patients off to, and the therapists. So if the therapists know enough to do some sort of an environmental assessment for exposures, because otherwise two people presenting with the exact same symptoms, only one of them has an environmental illness, well okay one person without the environmental illness may absolutely have a diagnosis of chronic depression or something. Right but the person with the environmental illness should not because it's just a reaction to being exposed to a toxic chemical.

Aaron Goodman  19:53

One of the reasons it's just so fascinating to speak with you and to hear from you is because of the work  that you continue to do around educating counselors and therapists? And would you be willing to speak about that part of your work? And how, how receptive are therapists generally, I mean--I mean, even doing this podcast, it's been challenging finding guests who specialize in MCS and do therapy. But how easy is it for folks to find a therapist who knows about and recognize them? So what are the top things you're sharing with them so that when they meet clients, that they can be really supportive? What's the greatest need? 

Roselle O'Brien  20:34

It's not easy to find a therapist who is well versed in working with clients with environmental illnesses. That being said, the biggest challenge that I have found, even like there is a psychologist who specializes in working with clients with Chemical Sensitivities, but it was a real struggle to get him to see just what we were just talking about before the--here are two people and teasing apart. Having an Environmental Illness doesn't mean that the person may not also have a mental health issue. That's fine. But teasing apart someone who's presenting like with let's say, it's anxiety, but to be able to tell, is it anxiety because of the person's normal situation? Or is the anxiety reacting to a toxic chemical in their environment? 

Roselle O'Brien  21:17

And it was the hardest thing initially, for him to make that separation in his clinical head. And we're talking about therapists we're talking about, myself included, people who, for a living, like to take things apart to see exactly what's working, what are the influences and how to best support someone. So once he got that, and he was like, floored for him, and he was like, he sat back in his chair. He was like, 'oh, okay, this changes things.' So I push for that aha moment, just, you know, so it's like, so now you need to have a tool to be able to assess what's what. 

Aaron Goodman  21:49

And we as folks with MCS, we understand that right? That whole chicken in the egg thing, we understand that if you live in it, yeah, we know personally, right? Like, I have, I think normal levels of anxiety, right, that we all do, faced with the global and the personal issues that one faces, right? Being alive today, we all have some anxiety, right? But I know my anxiety spikes when I'm exposed to a toxin as you're noticing. So why is that so difficult for, whether it's a general practitioner or a therapist, to really understand like, it's fundamental, and we want to be believed?

Roselle O'Brien  22:27

It's following a model. To follow--when I was taking the state test for licensure as a licensed mental health counselor in Massachusetts, and I was doing the pre-test things like the study to pass the test. And when I then assigned every single practice test, I failed, I failed, I failed. So I signed up with a different study online thing. And this other teacher said that regardless of what your approach is, to therapy and counseling, answer the questions on the test as if you're a cognitive behavioral therapist, and you will get the answers right, because that's what they're looking for. And I did that, and it wasn't what I--I'm not a--I do not--I know, of course I know about Cognitive Behavioral Therapy, you can't not know, but I am not a cognitive behavioral therapist. 

Roselle O'Brien  23:09

But I answered the questions that way, and I aced all of the practice tests. So there's this model, and insurance companies use it. That's why it's insurance to do what you have six sessions, you have four sessions solid paper. That's a cognitive behavioral therapy approach that does not work, it does not fit with any chronic illness, they try to make it fit it, and especially these types of Chronic Illnesses. So there's that so your walk, but when you get just a therapist, you're walking in the majority of therapists are CBD, but they're walking into an inappropriate model. And the therapist is entrenched in that model. And they have to be first shown that they need to step outside of this way of thinking. And that's a little bit of a struggle initially, but once the--the therapists that I've talked to they kind of one on one more and more, once they get it, they're like, Oh, I get this now. But so sometimes they don't even realize that they're just in that little box.

Aaron Goodman  23:59

And so you're saying very clearly that in therapy and counseling, they're working off of a model that's--so when they--when anxiety is presented, they're painting it all with the same brush, and really what it take is a nuanced approach. Are you optimistic that more counselors will--will pick up on this?

Roselle O'Brien  24:08

I started a PhD program, so just to work on specifically that with its focus. So I am absolutely yes. optimistic. We'll see what happens. But I--because it really is looking at where can change be affected and not the largest, but where are the patients going? Where are the individuals being sent to, in in in this process of not being understood or not being heard, and not being supported in any way medically, for the most part is that's the common experience is like, where's that target area where change can happen because it still is and it's also going to be 100% driven by the patients. So that's the other piece of it is is at hand the therapist but also so it's wonderful that you mentioned you're part of the group with so many people, because it's all a platform to share and educate each other on Facebook. So that's wonderful. 

Aaron Goodman  25:13

It's been so interesting listening to you, and it'd be wonderful to connect again, because you have so much to share. It feels like we've just kind of touched the surface, but perhaps as a last thought for our listeners. Would you advise folks with MCS, whether in the beginning or middle? Or how the condition ages? Is counseling or therapy, can it be beneficial? Or are there any other things? 

Roselle O'Brien  25:36

It can be absolutely be beneficial. Sometimes, to circumvent that cognitive behavioral therapy model kind of thing, it ends up then being what each person knows to look for. Strategies that absolutely help with, across the boards with reactions, are mindfulness ones, yoga ones, ones, visualization, things that are that body, mind spirit, those are things that 100% help. 

Roselle O'Brien  26:01

And knowing that they are a consumer. That when you go to find a therapist, or a counselor or somebody, you can, you should ask them what is your approach, because Cognitive Behavioral Therapy is good. If you're like nervous about getting on an airplane and need to go on a trip. Cognitive Behavioral Therapy starts with the premise that they're working to change the client's maladaptive behavior. So that's a completely wrong premise to work with anybody with MCS, or any Environmental Illness. 

Roselle O'Brien  26:24

It's living a life of a victim of all the things that are out of your control and other people's behaviors. So looking at what you can do with your responses, because intense emotions make things worse, whether they're happy or sad. I don't want to call it keeping that zen place, but it is kind of like that within oneself. That's all about recharging your own inner battery.

Aaron Goodman  26:45

Roselle, I just wanted to thank you so much for taking this time. And I again, I really sincerely think the work that you're doing is so beneficial for folks with MCS and I think people are really going to benefit from listening to you speak. So thank you so much.

Roselle O'Brien  27:02

Thank you for inviting me.

Aaron Goodman  27:03

That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you to Roselle O'Brien for joining me. The podcast was produced by me, Aaron Goodman, Dani Penaloza and Emma Bolzner. Please subscribe to the podcast to never miss an episode wherever you get your podcasts and follow us on social media. Just search for the Chemical Sensitivity Podcast or podcasting MCS. Get in touch Email me at info@chemical sensitivitypodcast.org  and I'll definitely respond. And thanks so much for listening.