The Special Needs Mom Podcast

Let's Talk About Loneliness

• Kara Ryska

Share episode

Send us a text

In this episode, I explore the deep connection between loneliness and grief as a special needs mom. Loneliness can feel like stepping into an unfamiliar world, while the rest of your community continues on like nothing has changed. We discuss how relationships shift in these moments and why feeling abandoned is such a common experience. 

This is just Part 1, where we unpack loneliness, so stay tuned for Part 2, where I’ll share more on the antidote to loneliness and offer actionable insights!

If you found this episode helpful, share it with your community, tag me @thespecialneedsmompodcast, or leave a review on Apple Podcasts or Spotify!


Resources from this episode:



Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Join the Community:
Pathway to Peace Coaching Community is currently open for enrollment. Instantly get access to authentic community and weekly coaching! Give yourself the gift of growing alongside moms who deeply understand you and will be with you in your joys and sorrows. --------> Learn More HERE

Speaker:

Hi, I'm Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible. And the dreams I once had for my life and family felt destroyed. Fast forward past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the special needs mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flair of possibility. In your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone, or stuck, then you are in the right place. Welcome.

Hello, and welcome to the Special Needs Mom Podcast. I gotta admit, my palms are a little sweaty. I noticed that as I was getting ready to record. And I guess I think I'm a little nervous because this topic is so important to me. I've, been wanting to record an episode on this topic for quite a while. Every time I talk to a mom, first off, it's my privilege to be able to hold a space and meet moms where they share what they're actually feeling, thinking, fearing, and most of all, they share what they're desperate for. So I get to hear this, I get to hear the honest conversation from moms. And so what I know is that the through line that connects All of us to this experience of being a special needs mom is having some capacity of feeling alone or loneliness. So that's why this topic is a topic I really want to do justice to. I actually had to let go of a lot to be able to actually hit record because This is such a big topic and there's no way I could do, I mean, there's books on the topic, right? So I could not do justice in one episode. So I had to let go of the idea that this was ever going to feel complete and just hit record. So I gave myself permission. What helped? I said, you can always record more episodes. I know it sounds simple, but like, it was a helpful reminder to let myself let go of the wantingness of having this be, I guess, like, Complete or conclusive and it is not, but what ended up happening is, essentially I created three podcast episodes as I was trying to create one and kind of what evolved as I was creating them was, First, what we're going to be talking about today, which is loneliness itself. And then we're going to be leading into what I'm currently calling the antidote to loneliness. change because I do that. I come up with something and then something better emerges, but essentially it's going to be part one and part two. And then we're going to go into the broader topic of grief itself. Okay. Before I lose you there, I want to give you this cautionary note that I know these topics aren't super sexy. They're not like, yay, this is so fun. Let's go talk about grief and loneliness, but they have the potential, I think, to shift the experience you're having more than, I don't know, more than so many other topics that we've talked about here. So please stick around. I absolutely know that you will not regret it. Let's start, let's lean into the topic that we're going to be talking about today, which is loneliness with. Developing common language around the experience of loneliness. It's interesting. I looked it up on, you know, good old Webster and it was good. and I do have that definition, but there's a book I have called the dictionary of emotions and the definition there. It's very simple and actually the definition of feeling lonely, which is lacking a companion or a loan. the definition I liked from Webster, the one I pulled out.'cause there were several different forms of it. Was sadness resulting from being abandoned that one actually stood out to me quite a bit What I want you to make a mental note of is this word abandoned or in other words an emotional? desertion or feeling of being separate from something My guess is that's already bringing up some feels or connecting with you in some way. And I would never have used those words that Webster brought in terms of the definition sadness resulting from being abandoned. But when I did look at them, I'm like, Oh my gosh, that's a great definition. And you might think like, well, what is being abandoned have to do with being a special needs mom? Everything. As we learn more about the experience of grief and its connection to loneliness, I think it's going to make so much sense. There's another definition that, I mean, I love them all, but this one really hits it. This is from the book together written by Dr. Vivek Murthy. And he writes, loneliness is a feeling the body sends to us when something we need for survival is missing. It's just like a signal for hunger or thirst. It's like, wow, I don't think most of us think about loneliness being that important. The major clue here is that human connection is essential, as essential as water, food, and shelter. And oh my gosh, when you think about it that way, you realize why this is such a commonly vocalized and experienced Situation for us as moms. So let's look at the interconnectedness of loneliness and grief. Like what, how are these two things linked together? I don't know. It's not the best. metaphor, but the one I came up with, it's like socks and shoes. Like they exist on their own. Like you can have just socks and you can have just shoes. But they're more commonly experienced together working as one unit, like on your feet, you know, doing their thing. And so they're just very, very interconnected. So before we answer the question, I actually want to go back, we're going to go back before we go forward and look at grief itself. If I asked you, I wish I could see you raise your hands. If I asked you prior to this conversation, if you felt like you were grieving, if you were a mom in grief. would you put up your hand? Would you be like, yes, absolutely. Amen, sister. Or would you be like, no, or would you be like, no, no, my child's still here. Not at all. My guess is that most of us are not at the place where it's hands up. Yes, definitely. That is for the reason that grief The word grief, the experience of grief, all the things is so heavily connected and associated to death that I think we elevate the experience of grief. We set it aside and reserve it only for when you experience somebody dying. Or being dead. So grief as a special needs mom, it's kind of the sleeper in the background all the time, not necessarily because your child has died, but because something has been lost. This kind of leads into one of my favorite deaths. This kind of leads into another definition of grief. which is. A yearning or desire for something that is out of reach. Think about that. The experience of having something that you desperately, desperately want that you know you cannot get to. That's grief. And then think about your experience as a mom, and all the things that are out of your reach, your child's health, your child's happiness, your experience of being mom. Your ability to rest I could go on and on this list is, is just like the tip of the iceberg, but you think about that for yourself. What comes up for you when you think about what you're desperate for, but what is out of your reach? Grief can also be defined as a pain in response to loss. You see how much broader that is than somebody dying. It's any loss, pain in response to loss. Maybe even we can make it more personal. The pain you're experiencing in response to the loss of what you thought your child. would be, or would have, or how they would exist in the world. So like I talked about earlier, some of you are very aware that you're grieving. And for some of you, this is going to be a new association to the word. The idea here is I'm inviting you to call the experience you're having grief, own it and to acknowledge it. So that's where we're going to pause looking at grief itself, but again, I want you to consider that what you are experiencing is absolutely grief. So let's turn back to the question. Why grief and loneliness, like why are they so intertwined, interconnected, and specifically why is loneliness such a common issue for us as special needs moms in our journey? Why is this like the thing that all of us experience? Your life has changed and nobody else's has. which makes us feel alone. And maybe nobody else is not quite accurate. Maybe it's better to say your life has changed and most of the people that you knew or know had their life has not. Your life just became entirely focused on your child's diagnosis and the rest of the world has gone on like nothing has happened. It's very likely. I think back to like my early years becoming a mom. I don't know. It was really a special time in my life. I actually look back with it and I think I'm actually missing it a lot lately. Life was very simple then. My special needs son is my second son, so I was a mom to typically developing child, my oldest son, who's now 17 and things were not easy, right? He was born in 2007. So like financially things were a little tumultuous. if y'all remember that time. But it was such a precious time and I became a mom with so many people around me. That's why I think it was really special. So excited to become a mom. I was in the club. And so my assertion here is that you were in the club, like you became a mom with other people around you, or you at least anticipated that that might be more accurate for many of you who might've gotten diagnoses for your child in utero. So in my own story, we had a very distinct day in which our life changed in an instant. In an instant, we became the parents of a toddler who had a brain tumor. So suddenly we were ushered into this new and horrible club against our will. Nobody else, zero people in our community went on this journey with us in the way that we were experiencing it as his parents. Me and my husband and, you know, of course his, his brother. And as I was preparing, for this episode and kind of, you know, working on these concepts, I had this image of a group of people in like this building, like think about like a big, you know, kind of common space where people are doing their life, like almost like a train station or something like that, where they're just think people are living their life, they're doing their thing and you're part of that. And then there's this door off to the side that leads into a new room. And this new room is barren, like complete emptiness, unfamiliar, and worst of all, you're the only person that is entering this new room. You're leaving everything that you knew or know, and you are now in this completely foreign place. That you don't want to be in. And as I was preparing this picturing this image, I think because it's so deeply described the experience I had and have, I can feel the pain of the separation from our old world or the world that I yearn for that I, I desperately want, but can't have. we are no longer. Living in the same world other people are. We now live in this new, unfamiliar world. Unfamiliar to us and unreachable and unfamiliar to those around us. When your child's life becomes different than you thought it would be. Your whole world is different. Think about all the things you anticipated for your life, for your child's life that are completely and utterly different than you thought they would be. Then your peers around you or your, community around you, and some of us enter this world in a singular moment, like I shared in my story, there was an exact date. And I can remember the exact words that ushered us into this new room and others. It's going to be more of like one small step after another, one small, mysterious, stressful step, but eventually, Find yourself in this new foreign place. The image I get for this is like wandering through a forest like it's it's like not terrible But like a little bit dark and it's like further and further you're stepping away from what was into this new foreign land Where you find yourself and then realize nothing is known or familiar and all the people that you Used to have as part of your community Aren't there anymore. Another aspect I want to hit that's common in grief, but also of course aids to this like connection of loneliness is a lot of us experience having really good support in the beginning or early days, but then everybody wanders back to their regular lives and essentially abandons us. I remember like, I mean, people rally for cancer. I think, you know, I've had a conversation here on the podcast about the differences between other disabilities and cancer. And, it's really interesting to watch how people rally for cancer. They understand cancer. they see the heartbreak and the fear in cancer. And so people come around and support us when we're, working, into the cancer diagnosis when we're like addressing the cancer, not so much the same when we're addressing all the other needs and disabilities of my son. So I'm able to kind of see this contrast is very interesting. And yet the experience of having those people wander away. when what they perceive as the hardest part as in like the cancer treatment or maybe a hospital stay and wander back to their own lives, that's not an easy experience. And I remember early, early in our diagnosis, which was now over 13 years ago, I remember this, we were in the hospital for two months and so people got that that's kind of a big deal. And I remember as soon as we got home. We were living in this new completely foreign land. And people just they weren't there in the same way anymore. My guess is that most of you that have had like long NICU stays or started with a NICU stay have experienced this part as well, where people get, Oh, your child's in the NICU. and then when your child comes home, the way that people show up and support is distinctly different. Here's the thing. Those people have a life, have their own same life to go back to. And they do. And your life no longer exists the life where you didn't know this kind of pain exists. It's gone. And so can you see the separation, this abandonment that I want to acknowledge, like, it's not that these people are like, I'm going to abandon you when you need me most. Like, it's obviously not that way, but that's the experience that we have. A key element here is that supporters, families and friends, they don't realize that you don't have a life to go back to. Like, it's just not in their context. Like, they don't get the level at which your life. As you knew it is no longer accessible. There's this underlying inability to understand what we're experiencing because they haven't experienced it and are very unaware of what we lost. There's this saying that I feel like it's very appropriate here that you don't know what you don't know. It's almost like their brain passes over the awareness of it because they can't connect to it. I want you to consider it's actually almost invisible to them. We won't go into the way the brain works, but that's kind of how this happens. This is why loneliness and grief are so interconnected, all wrapped up together, almost impossible to separate. Doesn't it make so much sense now to continue the understanding, continue our understanding of the experience you're having in being alone or loneliness. I want to take a look at relationships and how they change in grief or in loss in the experience of the pain of loss. And certainly we're going to look at how your needs change. If you think about this new land. that you live in, how can relationships possibly stay the same? It's like you move to Iceland and they all speak Icelandic. I don't know if that's a language, but let's say it is and you don't. So when you have to learn a new language, and let's just say for sake of this argument, like that also you forget your old language. So how could relationships stay the same? You're in this foreign new place. So I'm going to highlight two different ways people show up or two different experiences you have with people. That might be a better way to say it. And we're really just going to look at the two extremes. We're not going to look at everything in the middle because I think it's important to highlight basically the experience that we know does not work and probably the experience we have all had and. We're going to also turn to the experience I think we're all yearning for. So first, we're going to look at what we're going to call false comforters. I feel like I want to try to come up with a better name for this group, but we're going to go with that right now. These can be people close to you, family, friends. These can be acquaintances, people you meet every day. I want to say for these people, generally they're trying This is not out of ill will that they fail to bring comfort and feel supportive. This is just people being people and you can't give what you don't have. And what these people need that they may or may not be aware of is they need to make what is happening appear okay or be much less painful. In other words, they don't have a capacity to be with the pain that you are experiencing And so they don't, they don't be with you. These are people commonly throw out those one liners and the cliches that we've all heard. Sayings like God only gives you what you can handle, or maybe the less spiritual version. Everything happens for a reason. Even something like you'll get through this, and this is an interesting one as you think about it in this context, the you are so strong. Now, if you go back to some episodes, there's an episode I had with Effie Parks. I'm actually a fan of this saying. It depends on where it's coming from. And here's the thing I want to highlight. The reason so many of you don't like this comment or this comment lands in a negative way for you is because generally it is said by people abandoning us in our pain rather than a true recognition or acknowledgement of who we are. So it's more of a, I can't handle like, I don't want to, you'll be fine. Like just, I'm going to leave you over there. You're so strong. You're probably going to be fine. There's an abandonment piece of it. So that's why it lands in an icky way or in a way that doesn't feel supportive versus if somebody is sitting with you and knows you and you are feeling seen by them and they stand back and they say, damn, you are so strong. Strong, that lands different when they're really acknowledging who you are being and who you have been. Okay. So that's why it's actually really interesting to see. It's not the words, the one liners themselves that are the problems. It's the way people are being, when they're saying it, those sayings are being said in an attempt to soothe everybody. It's an evacuation from despair, because if you really look at some of the lives that we have, there's a lot of despair. I mean, I know we don't always take a minute to stand back and look at our own life, but whoa, like when you do, I can't even put words to it. It's like so awe inspiring and so despair enticing that no wonder a lot of people run. So their evacuation from their despair leaves us. alone in ours too. So there we see that abandonment. Oftentimes what people do, this, what I'm the group of what I'm calling false comforters is they have a need to insert a future hope. into the present loss as a way to cope. Like it's going to be fine. I'm sure it's going to be fine. And for us, it's very difficult to have this hope in a way that actually feels hopeful when we know that we have a diagnosis that is life. So we don't really have this coping option to rely on and trying to like, make it better in the future. Like, Oh, they're sick now, but they're going to get better. Right. And so I think people, I'm sure you can see this happening or have happened in your own life where it's like, people are trying to convince you or themselves that it's going to get better. And in some cases, and so like with cancer, in our experience, it's like they desperately want, Us to be on the other side, to be past treatment and to like be in the okayness and the cancer spectrum because that's how they feel comfortable to not know is leaving them in a place where they're not ready to manage. So then that's how they show up in relationship. And again, we are alone in our pain. So. Essentially, these people are refusing to be with the sufferer, the suffering. Now it makes a million times more sense why deep loneliness is such a common experience. Remember back when I said in the beginning about this definition of loneliness, sadness, resulting from being abandoned when people can't or won't suffer with us. And I want to address also, there's this element of confusion because a lot of us have people technically there. But we are still experiencing this aloneness, this experience of people not being with us. So this could be your spouse, your husband. This could be your mom, your dad. This could be your siblings. This could be anybody in your life, really, obviously. And it's confusing because you're like, okay, I love them. They love me. I know that. Don't doubt that. I know they love my kid. I know they want to be there, but yet I still feel alone. And that can be very confusing. It's confusing to be in a room full of people, say at Christmas or whatever holiday you're experiencing in your family, that you're like, okay, all these people are here. I know them. They know me, but I feel so alone. This is the reason. It's the reason that they can't meet you and be with you where you are at, which has us turn to the second experience in relationship or maybe better said experience with people. So this other group of people is essentially the opposite extreme. This is relationships that are non anxious, non judgmental, comforting presence. What does the non anxious mean? It means they don't need you to be a certain way. You can just be however you actually are. These are the people that'll say things like, tell me more, or thank you so much for sharing. These are the places where you get to say what. Ever you are actually feeling without wondering, Ooh, what are they going to think of me? Or fearing that they're just going to think you're horrible person. It's the places where you feel safe enough to do that. The thing about this space is that it is addressing the one thing this sufferer AKA us really needs and that is to be held in our suffering. So these relationships, these places that are non anxious, non judgmental, comforting presences, they don't need the pain to go away. It's really good for us. You can see the hope here because our pain's not going away. It's here to stay. And this to me, as I'm, you know, as I was thinking through this, it brings so much hope to give us the potential of being what I'm calling a thriving griever. This group of people we can look towards into you know, the antidote of our loneliness, and we're going to wrap this episode up here. It feels a little abrupt, but it is essentially part one of the part two. Yes. Next week we were going to be talking about the antidote to loneliness. And so as we wrap today. I want you to think about the people in the spaces where you do experience the ability to show up as you are, where you feel held, where you feel safe, where you feel comforted, where you feel free to say the thing that you don't say to everybody. I really hope that you can think of at least one, but if you can't, I want you to know that that's very, very common. And don't worry, we have you covered. So next week I'm going to come back and we're going to share more about this, about where do we go from here now that we understand the connection to grief and loneliness and even understand our, why our own experience is so deeply connected to loneliness. We're going to, to look at that. And always my aim is to make this podcast actionable, tangible, providing those breadcrumbs. Of a trail for us to follow and to follow our own instinctual leading. And so I want you to be encouraged to follow that own instinctual leaning that you might even already have. And just think about who are the people that I already have that can hold this space for me. Okay. Now I have one request for you as we wrap up. It's a favorite. To me, and I'll say to our community, if this episode was intriguing or valuable to you, I'm going to ask that you consider sharing it. That would be so helpful. So This can look a couple of different ways. You can share it on a lot of us have diagnostic specific community, Facebook groups. So share it there and say, Hey, this is an episode I listened to. This is why you should listen to it too. doesn't have to be this episode. Obviously it could be one that was more meaningful to you. You can share it on the old Instagram. Don't forget to tag me the special needs mom podcast, or. If you're like, I want to be a little more low cognito, you can leave a rating or review. So whether it's on Spotify or Apple, I think those are the only two places really taking rating and review, but they both do go ahead and go and rate if you are short on time. But then if you have an extra, like, I don't know, 30 seconds, leave a review, write some words. It's so encouraging for me to see these reviews pop up. They mean So much to me, they are so encouraging to me. So, and then I guess lastly, I got to add it like, Hey, don't, don't forget to text the show. I love hearing from you in that way too. Okay. Well, I love you guys and my palms are a little less sweaty now and I'll look forward to seeing you on the next episode.