Emotional Cost of Sharing Your Story

Sharing stories is often one of the first things that families are asked to do. In today's episode we discuss how it makes you feel to share, very personal and sometimes very difficult stories. How when you are re-telling your story or hearing somebody's story, you're right back in that moment. How there's an emotional cost to that, but also there's power in that, too. 

Transcript

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Welcome to Linked Together a family center program. I'm so excited to have you along. As we share our stories Hello. I'm so glad that you're going to be with us today as we explore what it means to share your family's stories. Sharing stories is often one of the first things that families are asked to do. So what I really want to know is how does it make you feel to share, know, very personal and sometimes very difficult stories? Sometimes you re-telling that story or hearing somebody's story. You're right back in that moment and and again, I think there's an emotional cost to that. But I also think there's power in that, too. So, yeah. How do you feel? How do you feel about it? Do you tell everything? Do you hold some back like. Yeah, I think it depends. I think it depends on the situation. It depends on who you're talking to. How comfortable you feel. For me, some of my stories and telling them is is liberating. You know, I have to work through emotions and they do help me work through emotions. Sometimes it's scary, you know, because you're vulnerable and you don't know how someone's going to respond ard they're going to judge you? Are they're going to think less of your children? Or, you know, I don't know. So, yeah, it's kind of a strange thing. I think it just depends on the situation for me. But I have found them both to help me. They're helpful, but they are difficult to talk about. Hmm. So we've been telling our story a long time, and I've gotten used to it. I've even gotten used to it where I can kind of steel myself when it gets to the to some of the tough parts of the story. And it is definitely situational as to how how much I want to share and when it's appropriate. I will never forget how many times we would be in a grocery store line. And my two children there, one with very obvious physical disability, and have the person behind me think that they had the right to say,"So what's wrong with your child?" And I assume wanting to hear the story. And so depending on my mood, I could use that as a teachable moment. But other times I just had to say, you know, there's nothing wrong with my child. We just have some medical things going on and then turn around and get my groceries out the door. So it's very situational. And then using that story to hopefully create change. And so those times when you're in those right environments to do that, whether it's with a physician and creating change in the moment of how they perceive the health care of your child, to larger opportunities if you're presenting at a conference or whatever. So it's situational. But I have learned to work through the struggles. But sometimes people get me You said the grocery store line, and that brings back memories for me. Because my son wore a helmet. And I remember having the, you know, for his Craniosynostosis and it was the cutest thing. And I thought he just looked like such an adorable little thing with his big cheeks. But but I had comments and the snickering and, you know, the whispers don't ask. And one I'll never forget. One older gentleman said, to me, "Did you drop him on his head?" Hmm. But, you know, like, those are the moments where I did not have it in me to respond. I didn't laugh. I hardly acknowledged him because it just was heartbreaking. Yeah. I think sometimes you don't have the bandwidth to. There you go. You know, sometimes sometimes you just have to sit and and evaluate. Do I give the 90 second spiel of what we're going through? Or do I just completely dismiss that you've said something? You know, for me, it was definitely situational, but I think, darn it, when we first started, you know, I felt like talking about it made it too real. Mm hmm. So I didn't want to I withheld what we were going through because it was something about saying it out loud. I don't know. It just. It made it just so real for me. I felt like if I didn't talk about it, I wasn't dealing with it. Like, if I didn't talk about it, it wasn't happening. So I withheld it for a long time. And when I say a long time, but it I... at 22 weeks pregnant through, you know, I just, I, I didn't share with our family immediately with what we were told prenatally because I didn't want that. I didn't want them to know, I guess. I don't know. It was just it was a sense of almost a shame. I was embarrassed. I don't even know. It was just so many different emotions for me. So I just I didn't share when I decided to share. I think that's when I realized you have to choose what you share. And with whom you share it because now I'm talking about it more. And you've got people say and I know people mean well most times but they "Oh, doctors they don't know." And and doctors this. And so so to some degree, it's like, now I wish I hadn't said anything because we're going through the the doctors don't know, but you can't strip away facts even though you believe something different like you have to. They have to mesh together kind of, you know what I mean? And so, so so I withheld again because I didn't want to hear"Oh, don't listen to 'em." You know, don't, don't, don't listen to what they have to say. They so like friends or families, we're telling you kind of... Yeah. Like, oh, oh, yeah. Yeah."Trust your instinct", you know? Yeah. You're saying,"Don't worry about that.""They don't know what they're talking about.""Just don't listen to what they have to say." And and I believe that. But I also know you have to hear the facts, too, right? And you have to find that balance of of what you're being told and letting your faith play play out. And then after Elijah was born and he started to do well or well with what we are living with, I didn't want to share because I felt competition. Like, when I when I met other Trisomy 18 families and it was all just social media. It was never in person or anything. But like, there was this, oh, well, your child is doing better or your child and have a trache your child and have a g-tube. So I felt like I wasn't a part of the, the, the community. So I just I so it's very much situational, but a lot of the situation is not necessarily not wanting to share. It's really the feedback that you get from the people that you're talking to. Yeah, absolutely. And something you said really resonated with me as well. So again, I've talked about it. My kids are deaf you know, but they, they did really, you know, they did well academically. They did well. So I almost felt like I wanted to withhold that because first off, I didn't want others to feel that badly. Right. Like, I really didn't. I to me, it wasn't. And it's never been about like what they can or cannot do like. And so I felt that sometimes some of that pressure of, oh, well, they can do well because of this or you know, and I just never wanted it to be about that. I wanted it to be more about the experience and our shared experiences versus what actually they could or weren't doing at the time. You know, I've had I've had moms and specifically moms just because of the group that was a social media group, I've had moms completely stop responding like they would ask a question. Mm hmm. And I would try to respond to the question based off our experience. You know, something as simple as, you know, are there any moms who puree or blend for your child? Yeah. And so I'm jumping in because we puree all of Elijah's meals and I'm trying to give a comment or a response. And she stopped responding because Elijah doesn't have a g-tube. Right. But the question wasn't about a g-tube. The question was about, you know, something specific. Can they toloerate pureed food? Right. So. So for me, but that just it just it it gives you this pressure of why why do I even bother when you get these type of responses from folks? It just it makes it makes it hard. It makes it. But I do believe that sharing is therapeutic. You know, I have found a lot of, um, strength from sharing our journey, but it doesn't make it easier to share Oh. Well, gosh, Go ahead. There's something you said about making reality or truth mash. Right. That made me think about my son who has an invisible disability. Right? He has autism, and he does a great job at masking in school and in social situations. So people don't really see the struggles that he goes through internally. And we go through our home and all of the different things that he's dealing with, sleep disorders and things like anxiety and things like that. So when I talked or have tried to. Talk to certain people, even certain family members. I get that. "No, he's fine.""My son does that too.""Oh, no, no. You're imagining things." Yeah. So they don't understand or can really imagine what I'm talking about. Right. And that's kind of dismissive. Yeah. I don't like that. That makes me feel, you know, very unappreciated and misunderstood or you know, my I don't know, but it's just such a negative feeling that I have learned with certain people. I keep my. Conversations. To a minimum. I don't respond in the Facebook group. Yeah, well, and I've experienced that, too, because I have a son with very apparent disabilities and a daughter with not apparent disabilities What I finally learned to say in sharing my story is saying, especially for her, because that is the exact same comment, oh, you're you know, and that all kids do that. Yes. But do all kids do it as much or you're seeing the tip of the iceberg? I am seeing the 24/7. And to to just say, you know, I acknowledge you I hear what you're saying. And yes, many of us have these stories of a behavior especially it was usually around behaviors. And I just have have learned to have to let some things roll off my back because they are not my daughter's parent. They are not living with us and seeing those things. So that story just you have to realize that there's going to be some of that and and keep moving on. Yeah. Thank you. Keep moving on. And you know, the other part of telling about their successes, I'm proud of my children. I'm I'm happy for their successes and their hard work to reach those the successes it has not been easy for them. And what that has been for us, we've had people come up to us to say, your daughter has given us hope. Her success within the spectrum, that is Soto syndrome. You know, we we're excited that there are those possibilities. And so that's I'm OK with telling about her, her successes and realizing there's relativity to all of our stories. It's just an all a relative thing. Yeah. That was the point. I was going to kind of mention that. So I think it, too, sometimes depends upon the community. You're kind of rolling around in, right? So or you're part of That, some communities are... have very strong feelings about the way you should be doing things. Or shouldn't be doing things or choices that you should be making or not be making. You know, I'm speaking from my experience and working with that. There's lots of conversations around whether deaf kids should be sign language or not sign language or there's just lots of conversations around that. And and questioning of parents choices. And and so it's a very difficult community to be a part of And so I think there is potentially more holding back a little bit because of that because again, I don't want to get into those discussions because I really do feel that, you know, whatever as long as parents have all of their information and they kind of look at them and they they make those choices that work for their families. Right. So you kind of trust that. But yeah, so that that can be hard. I think I think that's a really good point. I think I think that's why people shy away from communities, even if they're, you know, even if it's their disease affiliation. Yeah. I think that's why people avoid them because there's this there's still this sense of judgment when you think... and comparison, like I felt I told my husband, I said, I didn't realize that we were entering a competition. You know, my kid's sicker or. You I know, absolutely. I didn't realize that that's where we were crossing over into. But that's that's exactly how I felt. I, I felt like I was competing. You know, I've even had someone say, oh, your child is doing well."My, my kid has the worst kind of Trisomy 18." They're all the worst kind. Right. Right. So I know it's. Yeah, it's a dark underbelly of that world. It really is. And and and that's another when you talk about the rest of the world, they have no clue that those are the kinds of things that we're going through emotionally and because they if they have kids that don't have health care needs, that don't have a diagnosis with that rare tag or whatever, they're not realizing that that is the case or even just chronic care conditions like diabetes or asthma. Yeah, I was going to say, it's really. It's really anything can happen anywhere. Yeah. I've had a similar situation to to yours, Sarita. Where I've actually had people say to me, well, she you're regarding my daughter has Down syndrome who has visible disability."Oh, she doesn't look like she has Down syndrome." She must have a very mild form. And it's just. Those are moments where I'm like. What? Yeah. I think we need to talk about how it works. Right. Let's go back to science. Yeah. Right. Right. I think I just. I don't know. I think I think it's just because they're experiencing something different. They think your journey is easier. Or when I mean, like, you just say, it's. It's still the same hard road. We're just we may be traveling a different path, but it all leads to Down syndrome. It all leads to Trisomy 18 It all leads. You know. It says we're all in the same storm. We might be in different boats, right? But we're all in the same storm. All right? Like, there's we are not competing. I say that all the time. We are not in the Trisomy 18 Olympics. We are not competing to to win the race in terms of, you know, our kid is doing better than yours. Like, that's that is not our goal. But I'm telling you, that's how folks made us feel. Yeah. Yeah, I believe it. So the other part, I guess the storytelling, too, is then for the greater good and improving and saying, let's hold hands to this storm. Let's all come together for the storm and and let's help those that that don't have the kinds of experiences to help them learn. And so that's the other part of it is that there's some things you roll off the back. And the other thing too is I've also had to learn to ask permission to tell that story. Some people don't want to hear the story sometimes they're not ready for the story and then ask permission of my two, now adult children,"Do I have your continuing permission to tell our very vulnerable very intimate stories?" I go to board meetings and I'm expected to tell those stories or to committees or whatever. It's the rare occasion that I hear the medical professional baring their soul right and telling their intimate stories. And guess what? They're getting paid a lot of money. And I'm not always getting paid anything, to bring that level of unique expertise and that unique story that they're not going to get from anyone else because it's my family, my story. And so that idea of bringing people along, but also expecting that there needs to be the respect and and compensation for our willingness to do that. Value. Well, and sometimes I when you're in those situations, like, again, I've been here long enough, I've heard so many family stories that sometimes it's not my family's story to tell it board meetings, but it's really like a collective of family stories. Right? So that's true. There's a lot of shared experience here or you know, that I go, OK, well, this is what I've heard a lot of families tell me this. But I also one of when you touched on like sharing these very intimate personal family stories, I often think about that, like, OK, so you've talked to me, you've heard 3 minutes of a very personal story, but really that's just 3 minutes of you know, whatever that story was about, right? It's not that collective. It's not really even my whole journey or my symbolic of our journey or where we are. That was just a moment in time. And so sometimes I think we kind of lose that or miss that. And sort of as we go and sit on these boards or wherever in public present and we just tell our story. But it's only like like I said, like it's just a little piece. And so it's like, I don't want that to define me or I don't want that to define our children. Or our family or other families. Yeah. So I do think that there is a struggle with that. It is. It's a balancing act of, of how you're speaking as that the generalizations of many families have this. Versus this one piece of my story very much underscores where we are in this conversation or this piece of advocacy that we're working towards. And the stories are not always hard. I've got some very funny stories, joyous stories, poignant stories, but it's when to use the right one. And when to have that kind of global,"I'm now speaking on behalf of many families and many stories that have been shared with me." And I think that's a great point, I was actually thinking that same thing. I think if I'm if I'm doing a presentation, if I'm speaking and I'm presenting, you know, what are we talking about? You know what I mean? Like, is is this the three minute story of our journey because it fits this situation or, you know, am I giving you the full scope of what we're dealing with every day? Kind of thing? And I think I think I think sometimes, you know, and it goes back to the respect of if the person wants to hear the story. I think depending on where in the room I am and in the scenario, you've set yourself up to hear my story whether you want to or not, because you've invited me to the space. So if there is no clear distinction of we want the 90 second overview, yeah. Then I'm going to share as much as I can to fit the, the, the mode or the mood, and I'm not going to, I'm not going to let you dictate, but that goes back to that three minute not wanting to be encompassed in that little bit, that bubble. I'm going to take advantage of the opportunity because now I feel because a larger story is so different, I need to share it. You know, if I only touch one family, then that's, hey, that's great. But I'm not going to withhold our journey and his successes because I feel like somebody doesn't want to hear it. If... don't ask me about it...(whispers) If you don't want to hear it. Don't invite me. Yeah. I mean, because it's his story to share and it's unfair for me to feel... it is valuable. All of our stories are valuable, but we're cheating ourselves if we if we continue to... I feel like I was cheating myself. If I continue to let the pressure of nobody wants to hear it or somebody is judging me or this... That doesn't take that feeling away, I just chose that I was going to share. Be comfortable with the uncomfortable. It's what I tell myself all the time. Yeah. Yeah. But I had yeah. It is hard. It is it's there. And yeah, it is hard and it is figuring and it is figuring out what you want to share and what piece you want to give. Because I do feel that every time I do share some of those, some of it, some of our stories that I do give you a piece of me. So I feel like I'm trusting you with that. And so it's whether you deserve that, that honestly I feel because I mean, you guys may find this hard, but I really am a fairly private person and I don't like to share some of that or some of the struggles or some of the worries and and so yeah, so for me it really is do you deserve to hear a piece of this? Because I'm giving you a piece of me. Right. That's a really good point, though, that I'm that I'm super private like that too. It may not seem like it. I know it's crazy. The work we're doing. We're out here talking and people crying over here and people are going to think like. No private. No, but I'm the exact same way and I sit and because it's important to me to know, what are you going to do with this information? Yeah. What are you going to like? Like, am I am I wasting energy? I'm giving you this from my soul. I'm talking about y'all know, we pull it from our toes to share this. Am I wasting that time and energy when folks are not doing anything with that information? They're not. They're not they're not using it to make something better. They just they just invited you to check a box off or whatever the case. May be you know? I hope that we are the seeds that are getting planted there's times where you feel like that. Yeah, but who knows? Three years from now, they're going to remember our stories. And it's a seed you've planted now that might not germinate for a long time or that pebble you drop in the pond and you don't know where all those concentric circles are going to go. But I resonate with you, Molly, and in saying "That's a piece of me, you now have it." Yeah. And that I hope that even just one family that there might be something for them there. Yeah. One physician or one teacher. Yeah. Vulnerability that I've mentioned. It is. So I hold all pieces of you and I freely give those little pieces of me to you. So thank you for being part of this and entrusting us with that. So thank you. Thank you for giving a piece of yourself. Thank you. The great conversations that we had today is supported by the Health Resources and Services Administration of the US Department of Health and Human Services. As part of the work of the National Genetics, Education and Family Support Program, the contents or those of the participants and do not necessarily represent the official views of, nor an endorsement by HRSA, HHS, or the US government.