This month we discuss mental health issues and resources for sibs with sib and psychologist, Emily Graesser.
Access the transcript here.
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Join the SLN for our FREE Mindfulness program!
"You are as deserving of compassion, and support and help and health and well being, as your sib. And in fact, you're going to do a better job with your sib if you're tending to those things."
Resources in this episode:
Music Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz
Music promoted by https://www.free-stock-music.com
This month we discuss mental health issues and resources for sibs with sib and psychologist, Emily Graesser.
Access the transcript here.
Acceda a la transcripción en español
Join the SLN for our FREE Mindfulness program!
"You are as deserving of compassion, and support and help and health and well being, as your sib. And in fact, you're going to do a better job with your sib if you're tending to those things."
Resources in this episode:
Music Credit: Hope by Scandinavianz | https://soundcloud.com/scandinavianz
Music promoted by https://www.free-stock-music.com
Welcome to the sibling Leadership Network podcast. The sibling Leadership Network is a national nonprofit whose mission is to provide siblings of individuals with disabilities the information, support and tools to advocate with their brothers and sisters and to promote the issue is important to us and our entire families. Hello, and thank you for joining us for another episode of the SLN podcast. This month, we are joined by psychologist Emily grazer to talk about mental health issues for sibs. Emily, thank you so much for joining us today.
Emily Graesser:Thank you for inviting me, I'm happy to be here.
Chris Berstler:So I'm just gonna start off by asking you to tell us about yourself and your experience in the sibling community.
Emily Graesser:So I am an only sib, my older brother, Joshua has Down syndrome. And he's two and a half years older, and we're both without outing anyone in our 40s. And so I didn't actually find the CIP community until I was finishing my doctorate in psychology. We grew up in a small town in South Dakota, I didn't really know any other sibs. And I was doing my dissertation for my doctorate on the kind of training that psychologists are getting to provide mental health services for people with disabilities. And just a little surprise there, not much. However, while I was doing all of that research, I noticed having all sorts of big feelings, big feelings that were getting in the way of writing my dissertation, big feelings about the findings, I was having big feelings about being a sibling, and what life can be like for people with disabilities and stumbled across the sibling Leadership Network and the subnet group, which was amazing and helped me kind of figure out some of my own things. While I was trying to do this research project.
Chris Berstler:Can I ask you to speak a little bit about your experience as a psychologist?
Emily Graesser:Well, I took a little while to kind of figure out what I wanted to do. And in my mid 20s, I got my undergraduate degree in psychology and was going to start a counseling program. That was a master's level program. And my husband, who was a brewer at the time had lost his job. And we needed to relocate. And at that time, there weren't tons of brewing jobs just lying around all over the place, like there might be now. So we ended up moving to Vermont. And I found the most amazing school program that was actually a doctoral program in psychology, that was really excited about to Antioch University New England. And Antioch is a school that really focuses on social justice programs. And as as being at the heart of their programs. And so that is how I started working on my doctorate in psychology. So we stayed out there for many years, four years, I think, four or five years. And then I, I ended up being matched for my pre doctoral internship with Indian Health Board of Minnesota, which is how I ended up in Minneapolis. So you have various clinical experiences while you're working on your doctorate, and then you go when you do a year of full time work as an intern, and then after that, I stayed in Minnesota and did a postdoctoral fellowship, where I focused on learning dialectical behavior therapy, and have been in Minnesota ever since. So I've been practicing for for, I don't know, about 10 years or so.
Chris Berstler:As siblings, how is our mental health journey special?
Emily Graesser:I think that as siblings, we have some unique factors. And I want to be careful about generalizing and that I see these patterns, frequently among siblings, and I understand it, you know, if there's a sibling out there listening and saying, Well, that doesn't apply to me. Don't feel weird or upset because there's there's a lot of diversity in our experiences. And, and us as people, but some patterns that I've noticed are that we tend to have intense empathy. And with that, even sometimes some kind of hyper vigilance to how people are feeling, how is everybody doing in the room? And it's interesting, because part of what we're doing is monitoring like, is everybody happy? Is everybody okay, I hear I hear that from a lot of siblings. You know, we're used to monitoring Your sibling, especially I've heard this from folks who might have a nonverbal sibling. You know, you kind of develop this radar. How are my parents doing? How is you know what's going on. I think also we get used to sort of monitoring the environment for threats. I can't tell you how many siblings I've talked to that you go into a restaurant with your sibling. And you know, you might be 678 years old, and you're watching everyone in the room to see how they are responding to your sibling. Right. So we've got radar for people's feelings. And that is both, I think, a superpower and sometimes a curse. Because I think the other piece that we do is we sometimes get messages overtly, or even just by virtue of being a caring sibling, get the idea that our job is to be the okay one. And to make sure everybody else is okay. And so I think that can cause some, some difficulties for subs, especially with their mental health. And, you know, I think for for a lot of folks that might come out as depression or something that maybe isn't recognized, until maybe they they leave their family, that that was something that kind of happened for me in college. And I think that was kind of one of the patterns that I saw on subnet, two, when I was joining the sibling community was these stories that sounded like mine of like, Oh, here's all this mental health stuff. I went off to college. And now, like, here it is, I feel like I'm falling apart. And I think it's because it's the first time you've, you've done alone, and nobody, including maybe yourself has ever noticed this stuff going on for you.
Chris Berstler:So what are the main challenges that most sibs face with mental health?
Emily Graesser:Well, I think, you know, there's probably in the maybe non pathological realm, subs who end up doing a lot of caregiving. And sometimes, you know, as they age, they're caregiving, lots of people, you know, they might be caregiving, their sibling, they might be helping take care of their parents, they might be taking care of their own children. And so burnout, I think, is something that a lot of people can identify with, I think beyond that, depression and anxiety, which, you know, are frequent fliers, for, for lots of people. But if you think about it, when we maybe have very limited time to attend to ourselves, and when we have this constant, perhaps, threat to our sibling that might be coming through, like, you know, the COVID 19 pandemic, it might be health issues, it might be, are they going to have a placement? Or is their worker going to show up today, or whatever, I think, you know, that can lead to a lot of anxiety. And then, you know, siblings, just like anybody else can have the full range of any kind of mental health channel challenges, right, that, you know, is informed by our genetics or things like that. So, you know, we're, we're humans, just like everybody else first, and then layering on being a sibling, I think, you know, layers on something, both wonderful, but a huge stressor,
Chris Berstler:our mental health issues different for siblings in the bipoc community or any other marginalized communities.
Emily Graesser:I feel anxious about responding to that, because I identify as a as a white woman as a sis white woman. So I want you know, this answer to be taken with a grain of salt. Because it's not my experience, and I don't like to speak for people. However, as a therapist, having working having worked with people from communities of color, or other sort of marginalized communities, I think, again, it just adds a huge layer of complication, or of difficulty, right? Because who you are in the world that already is hard on people with disabilities is already hard for subs to navigate and then you add another layer that makes it hard all over again, right, you have sort of duly, duly marginalized identities. And I think, you know, the research shows that, you know, people from those communities are less likely to be listened to and to be heard, are less likely to get the kind of help that they need, or less likely to have the research sort of match their lived experience because they've been excluded from research for various ways. So, you know, my, my sort of cautious answer is that that is that it's very difficult To add that layer on of identity, and I can't imagine worrying about, you know, that that racial injustice towards myself, in addition to just that danger, right. And we've seen those stories on the news of, you know, a black man with autism or something, you know, being being challenged by the police. And so I think it just, it's there's a lot of barriers that perhaps a person with some privilege doesn't maybe doesn't experience as much.
Chris Berstler:What impact has the pandemic had on the mental health of siblings?
Emily Graesser:I think that can be really dependent on siblings situation. However, I think for most siblings, it was detrimental to their mental health, in many of the same ways that it was to to those of us who perhaps don't have disabilities, for siblings, especially they lost services. For one thing, which is huge, if you think about how how many people in in our siblings lives are likely service providers, and those people were just gone. And the ability to go out and do things, right, that make us all mentally healthy people, our sibs, just like any of us need things to, you know, work or something that that gives our life some sense of meaning activities, right? We need social relationships to feel healthy, we need to be able to leave our house and do things that are enjoyable and interesting. And all of that was just gone for a lot of subs. And I think add in, you know, that some subs are really, really vulnerable. So that maybe, you know, have to be protected more carefully and for longer than some of the rest of the population that felt ready to be able to go out. And then just the decimation of the, of the population of carers, right, like health care workers, and PCAs. And these managers and all of those people, I think, were so burned out, there was a huge loss of people working in that area. And so it remains still, I think, very, very hard to find service providers even to, to get ourselves out there again and into the world. And that's isolating and frightening and lonely. And that's not good for mental health.
Chris Berstler:What kind of supports would you recommend any siblings seek who are currently facing these mental health challenges?
Emily Graesser:Well, I think I'm a little biased in this in that I'm a big believer in therapy. And if if you can access it, and I think that's one silver lining of the pandemic is that access has gotten easier. Try to find a good therapist, if you're if you're noticing that your mental health isn't good that you don't feel like yourself, that you're not experiencing joy, maybe you're having like scary thoughts, or intrusive thoughts or having thoughts of like, I don't know if I can do this anymore, or, you know, feeling desperate, if you haven't, if it feels strange to smile. Or you're, you know, you're having major impairment in some areas, like, you know, you can't sleep anymore, you can't focus at work, or, you know, your, your body hurts all the time, or, you know, those kinds of things. I think, knowing when it's time to get some professional help is really important. And, you know, there's a lot of ways to find a therapist, and I think a really important thing is to find somebody who feels like a good fit to you. And that can be difficult and discouraging. But it's so important, you know, if you if you try somebody out for a couple sessions, anything, I just don't really feel like they get me. Keep trying, because I think you need to find somebody that you feel comfortable being in relationship with and can trust. So therapy, definitely, I think, also, you know, primary care providers are great in that. They catch a lot of stuff. So if you talk to your primary care provider, they prescribe a lot of medications if you're interested in that. And that can be really helpful to folks that can also sometimes make referrals. So like in my health system. That's actually who I worked through. I worked through regions and health partners in Minneapolis, and so primary care providers can refer people to therapists within their care system, so
Chris Berstler:I think that can be really helpful. You had mentioned different ways to access therapists and support, can you just mention a couple of ways that we can access supports?
Emily Graesser:Absolutely. So you know, if you're if you're looking for something formal like therapy, starting with sometimes your, your health insurance network might be one of the most helpful ways because therapy can be quite expensive. And so finding out who you're in network with is helpful in your in your health insurance can tell you that or you can do like a search through your Health Insurance website or something like that. Another way is to look at like a website, like Psychology Today, I'm not affiliated with them or anything, but I find that they're helpful because they have profiles of folks in your that would be in your area, you can search by area, you can search by, you can narrow your search by insurance type of problem, those kinds of things. And often, they'll oftentimes they'll say, if they if they have openings or not. And then also, I think looking at, like, you know, is are there any mental health clinics, near you kind of in your area, especially if you want to try to do in person therapy, finding someone near you. I'm not very familiar with some of these online platforms, I think most of them don't take insurance. But there are online platforms that are fully online, like better help or some of those. But personally, I think if you can use insurance, that's really useful. And also, I think sometimes seeing somebody that's actually in your geographic areas helpful because they're more familiar with other kinds of resources that you might need help with.
Chris Berstler:Are there any ways that you know of to find maybe therapists that are familiar with the sibling experience, or may be able to help in siblings in specific?
Emily Graesser:I think that can be really hard, I think what I have seen is, you know, there's some kind of word of mouth, that happens like on subnet or some of the some of the local, like, sibling Facebook groups, you know, I do put out there on my profile, that I am a sibling, because I think that work is really important. So I try to be transparent about that. I think looking for people who might name you know, when they talk about problems that they address or treat, or you know, areas of focus, looking for people who might talk about caregiving, or disability. And, you know, sometimes it's just hit and miss, I found, I've never found somebody who has a sibling themselves that I've seen. I've found some people who really roll with it pretty, pretty well, and some people who struggle, and I think, you know, being able to gauge how somebody responds, sometimes when you say, you know, look, I'm a sibling of somebody with disability, and that's a big part of my life. You know, what's, what's your experience around this? Or how might you be able to help me and getting a good answer to that question, I think is helpful. Because I think you can, you can gauge a lot, right? There's where a radar comes in? Do you? Do you understand something about this experience? Or not? Do you have assumptions that, you know, might kind of get in the way of our therapy? Or, you know, do you have any experience that could map onto this? And be helpful?
Chris Berstler:Yeah, absolutely. That's, that's good advice. I usually try to grill them before. So I would say, um, so I do my research, right, like? So are mindfulness and meditation good tools for mental health?
Emily Graesser:I think they can be fantastic. And I think people also need to be empowered to know what's a good fit for them. So there are some people who come to my office, that the idea of sitting still and focusing on their breath, makes them want to crawl out of their skin. And that that's cool, that's totally fine. We can integrate some mindfulness concepts without having to have somebody sit and focus on their breath. I think there's a really nice body of research that shows that mindfulness is really good for mental health. There's a number of mindfulness informed therapies and these are therapies I tend to draw from so as I said before, I trained as a DBT, or dialectical behavior therapy therapist, and that has a it has a unit on mindfulness in it. DBT has sort of a package of skills in a number of areas and one of those skills packages is mindfulness. us. Also mindfulness based cognitive therapy is something you might find or act. Acceptance and Commitment Therapy, I think can be really powerful for sibs. And again, it has these sort of mindfulness concepts at its heart, you don't necessarily have to do formal practice, formal practice can be helpful. And you can find different ways to do that. But you don't necessarily have to do that, to have a mindfulness informed therapy. The reason I like Acceptance and Commitment Therapy is because there, there is a huge focus on the acceptance piece, which I think can be something that's really important for subs, there are many things in our lives, and our subs lives that we can't change. And I think along with that, you know, it's not it's not a therapy, where you just sit and try to accept and accept and accept, there's also a focus very much on values, and not just like values in general, but a person identifying their personal values, and finding ways to take committed action in the direction of their values, while accepting all of the feelings that come along with it. And the thoughts and the reality that maybe we don't like. So So I love act personally, I think it's a really good therapy. And so there are many ways that we can integrate mindfulness, into therapy, outside of therapy, I think just doing mindfulness practice, if that's an interest is fantastic, because I think it helps us to develop that part of ourselves that can observe. So, you know, how do you notice that you're hyper vigilant all the time, if you're just in the experience, right, Mindfulness helps you separate a little bit and to notice, oh, here I am, I noticed this myself when I went to a mindfulness based stress reduction course. Here I am, I'm supposed to be meditating and focusing on the breath. And I'm wondering, I'm listening to everyone's breath. And I'm sort of checking on like, Are they okay? Are they feeling okay? Somebody's nervous, right. And so you need that watcher to be like, Oh, maybe I don't want that turned on right now. So I think it can be really powerful, as I said,
Chris Berstler:thank you. For any listeners out there who are interested in learning more about mindfulness. The SLN has partnered with the cognition behavior and mindfulness Clinic at the University of Illinois at Chicago, and next for autism. To create a mindfulness program. The program is made of three sessions. Our next session, session two will be on February 8 2023. At 7pm, central time, the theme is acceptance and willingness to experience life, you do not have to have joined us for session one to join on session two, and the entire program is absolutely free. And it will be followed up with a third session. In April, April 4. There's also pre recorded content available to watch a month prior to each live session, and courses available online. And if you don't have time to join us for any of the live sessions, no problem. In April after our last session, the team is planning to bundle the whole thing up and make it available online for free. Check the description below for links on registration and more information. All the information can be found on siblingleadership.org/mindfulness. Many people avoid seeking mental health support due to bureaucratic barriers or lack of funding. What advice and or resources can you recommend to help siblings navigate this system better?
Emily Graesser:Yeah, it's it's a lot. And you're right. It's not it's not easy. And, you know, I know dependent on state people, you know, can have you are more resources. You know, living in Minnesota, we have a pretty robust safety net, we have expanded Medicaid, we have a lot of really good resources here where people don't people don't need to be uninsured or that it's I think it's easier to keep insurance even when you're lower income. And in fact, you know, for some of the folks that are lower income, then the insurance that they have is amazing, like, covers really good treatment and lots of treatments. I think, you know, thinking about is there a free clinic in your area. There's a walk in clinic here, there's a couple of them and there there's even online log in, um, thinking about, you know, calling your insurance company to see who's in network, which I know is a pain in the butt. Thinking about about asking your primary care doctor, you know, who do they who do they refer to? Do they do they have referral sources? Do they have somebody maybe in their health system, you know, a lot of the health systems here do. A lot of like community mental health clinics, like a large clinic that gets state funding will have sliding scale fees. If somebody doesn't have insurance, some clinics that are community mental health clinics like Indian Health Board of Minneapolis, where I did my internship, they even had a social worker on site to help people get signed up for insurance and to do it with them. Sometimes through your primary care doctor, if you're if you're feeling overwhelmed by paperwork, or like you can't do it, they might have a social worker through your primary care clue could help you navigate that. But there's going to be paperwork, oh is, unfortunately, and there's going to be paperwork for your first visit. And just so that you're aware, what's what's happening in that first visit, is a person is trying to get to know you, all of your history, your mental health symptoms, anything that might be contributing to those symptoms, anything that maybe you're not aware of that might be impacting your mental health, and, and make accurate diagnosis, assess risk, determine if we're a good fit as a therapist and a client. And if there's a treatment plan that we can work on together, so a lot is packed in that first hour, which is part of why there's there's so much paperwork before your first appointment. On the other hand, sometimes people come without doing the paperwork. There are some therapists that won't see you. I think in certain clinic systems, they'll say if your paperwork is not done, they won't see you. It doesn't have to be beautiful, do the bare minimum that the paperwork, answer some of the most important questions, right, like, do what you can to try to get in the door. And know that, you know, once you get over that hump, hopefully, you're going to be on your way to getting to what you need. So say I do an intake with somebody, they do all of that jumping through the hoops. And I realized that they need a specialty therapy like, you know, a full DBT program, or EMDR for trauma or something. They don't have to do another intake if they're in a, you know, if they've met with me and I'm in a big system, I just refer them to one of my colleagues. Right? So so if you can get through the door, don't be afraid to ask that first person that you meet, even if they're not there, they're not the one. They're not your forever therapist, to ask them. Okay, what's next? Can you help me? Can you? Can you tell me? Who I should call? Or what do I need to do to get to the right spot? In Minneapolis and St. Paul, there is a resource. Gosh, no. And now I'm blanking on the name. But if you if you type in three, three mental health services in Minneapolis and St. Paul, there's a clinic that comes up and during the pandemic, they actually shifted to providing telehealth, and it's walking counseling, I think that actually might be what they're called. Okay, and you can literally just walk in now, you know, there's some limitations to that sometimes. And that, you know, might be great if you're a sieve, and it's like, suddenly you have an hour and you need to just go talk to somebody, you, you know, you're not going to necessarily have a coherent treatment plan or something where if you come back, you know, three different times, maybe you talk with three different people or something like that, but I think, you know, it can be good, and maybe they can sometimes point you to some resources. And then like, the community mental health centers often will have like sliding scale fees. There are some things to like through through your health plan, they may have access to some app based kinds of resources. So our health plan, which health partners, the the, the clinic system that I work with, also has a health plan. And it's through the health plan has something called it's called my strength. There are some other free resources sometimes depending on the problem that are kind of app based. So the VA has some apps that are research based, particularly for PTSD. Even if you think oh, I don't know if I really have PTSD. you but you notice that you're being impacted by trauma. VA has an app called PTSD Coach. They might also have one, I think for mindfulness, I don't know if they have one for depression. Again, these are these are apps that are grounded in research, really comprehensive, you don't have to be a vet to use them. And they're free.
Chris Berstler:How can we advocate for better access to mental health care for ourselves and for our siblings?
Emily Graesser:I think that's a tough question. And I think it's the question that as siblings, we run into a lot, because you know, there, there are ways that we can try to do that. And we are tired. We are tired. We are lucky, when we direct our butts to that sibling meeting for a two hour. You know, to actually fill ourselves up and have a conversation. For those who are who have energy and want to do this, I think asking the questions is important, right? Like, we can be invisible our siblings experiences can be invisible. So starting to ask the questions asking at clinics, like who sees people with developmental disabilities, or what kind of experience do people at your clinic have serving sibs or people who might have a you know, a unique experience as a as a caregiver? I think talking to, you know, your your local politicians talking to people at your health plans happening to your state representatives, obviously, through sibling Leadership Network, there's a lot of ag advocacy that you can join in Lance also arc. Another really great resource that specifically for mental health, with people with developmental disabilities, and one of their goals is advocacy, also, education, all sorts of things is the NAD D, their website is the nad d.org, you might be familiar with them, it's the National Association for the dually diagnosed, and they're doing tons of work to try to improve the services that our siblings get. I think something to put out there is most people that you try to take your sibling to, unless you're at a specially specialty clinic, or not going to have had training working with people with disabilities. And I think, you know, that can be really difficult. And then I think your pool even gets more narrow, because most siblings, I would guess, are have, you know, are on disability, which means that they probably have Medicare for insurance, which means that the only providers that they can see are Doctor level providers and social workers. So if you go to your local mental health clinic, like my brother did in Spearfish, and there's one social worker that says one choice for a provider. So, you know, that can feel pretty disappointing. On the other hand, even if somebody doesn't have experience, even if, you know, they're the one provider, there are some really great people out there who are willing to try to do some research to give yourself good care, who are willing to coordinate care with you who are willing to consult, you know, who might be open to like, Hey, have you heard of the MA DD? So I think those are ways that we can advocate to your sibling got matched with somebody, they don't. They don't have a lot of experience with this, you can advocate that they try to find it.
Chris Berstler:What other words of advice might you have to share with any siblings listening, struggling with mental health issues?
Emily Graesser:I think number one, you're not alone. Certainly, certainly in the world right now. Thank goodness. You know, I think there's less and less stigma as people really struggled over the last few years and started to talk more openly. I think too, especially as a sub, you're not alone. The experiences that we have had, in various ways, are really difficult. In spite of also, you know, being rich and wonderful in so many ways, so, you know, if you feel like it's not okay to not be okay. I hope that you can think about that. You are as deserving of compassion, and support and help and health and well being, as your said. And in fact, you're going to do a better job with your said if you're tending to those things. And so You know, if there's any small thing that you can start to do to take care of yourself, if you notice you're feeling empty, that's a great start. I sometimes use the metaphor of, you know, this idea of taking one for the team. Because when I work with people who are subs or caregivers in some way in their life, and they do that in all their relationships sometimes, right, because we were trained up from from birth sometimes that, you know, if you've got one player on the baseball team who's always taken the hit, right? To get on base, like, like, you're not part of the team, right? They would never do that nobody would stay on that team, like a team is there's there's interconnection, everyone's wellbeing is equally important. And so to remember that, that, in order to be on the team, you have to put yourself on the team and advocate for your own needs to be met, sometimes to and to to find help and support. I'm excited about the free mindfulness course, that you all are offering. And I think, you know, when we're talking about informal supports, sibling Leadership Network has so many fantastic offerings and continues to add. And so I think it's just amazing to have found this community I remember when I, when I found the Facebook page and was reading about that. And then they happen to have their their national meeting in Minneapolis. Before the pandemic, whatever your that was, they did it 2018 or something. And I was like, Ah, I'm gonna go and check it out. And I talked to other siblings in person. And it was like, I felt seen in a way that I had never felt seen before. And that from a mental health perspective was incredibly powerful, right? You feel like it's just you, and you feel like maybe all of the stuff, editing my words here, that that you carry, or that, that pain, and sometimes brokenness maybe comes from you. And then you talk to other sibs that have similar stories. And you think, oh, oh, no, it's this. It's this thing. It's this thing that happened to us. It's this thing that happened to our family, to my sibling, and to me, and sometimes, it comes out in these ways. And maybe, maybe I'm okay.
Chris Berstler:Emily, thank you so much for joining us today. It has been an absolute pleasure. And it's been very enlightening. I appreciate it.
Emily Graesser:Thank you so much for having me. And thank you so much for facilitating this podcast and exploring these topics and all the you and Leadership Network are doing to help siblings like you and me and to help us help ourselves.
Chris Berstler:any resources that Emily mentioned, you can find in the description below. And make sure to sign up and join us for our next mindfulness session on February 8. All the information can be found on siblingleadership.org/mindfulness. Find resources, tools and information about the sibling experience on sibling leadership dot for the sibling Leadership Network is a nonprofit, and we rely on support from our audience. Find the donation button on our homepage and contribute to the ever growing sibling movement.