Episode 296: Karen DeBonis: Overcoming People-Pleasing and Medical Gaslighting

Hey, everyone. Welcome to the do the Thing podcast. This is your host, Stacy Lauren. Well, you guys, I'm so excited because I was introduced to my next guest from the fabulous Laura Carney, who has been part of my world for a while now, or at least for a year since we did the Bucket List challenge together. And I got obsessed with her book, My Father's List, and she connected me to my guest today. And I am so excited because it looks like the work that she's doing is really aligned with what I am really passionate about the most, both from the book that was in her heart for 20 years, that she ended up writing when she was in her 60s, and also the work that she does with people pleasing and all of the things that are connected to that. And it's, as you guys know, if you've been following this a while, these are all things that I'm really passionate about. So I'm so excited to get to talk to her is to meet her and really hear her story. So I am welcoming Karen to the show. Hey, Karen.

Hey, Stacy. Thanks so much for having me.

Yeah, I'm so excited. It's so great when I get to meet someone new and especially when it's introduced from someone that I'm already so aligned with and then already seeing. Oh, okay.

Wow.

That completely aligns with everything that I'm doing. That's great.

Right? Right. Yeah. And Laura Carney, the author of My Father's List, told me about you and just all the do the thing, and I thought, wow, it's definitely kind of where I see myself just having done the couple of things that I've done.

Yeah. Well, I can't wait to hear. I'd love to have you share your story and more about you.

Sure. So there's kind of two parts of it. There's the book part and there's the people pleasing part. And so the. The kind of core of it all is my son Matthew, who turns 38 in about two weeks, was diagnosed with a brain tumor at age 11. That was in 1997. And I was never a writer, but we kind of went through this ordeal. And a couple years, within the couple years after his diagnosis, we were really struggling with his recovery. And I kind of realized some friends had urged me to write a book. And I was like, oh, you're crazy. I'm not a writer. And the more I thought about it, I thought I really wanted to tell the story. And the story was less about Matthew's brain tumor than it was about how my people pleasing prevented me from advocating for him strongly enough and loudly enough for three years. So he went undiagnosed for three years. And because of that delay, even though he's doing very well today, he's completely self sufficient. But a damaged brain is a damaged brain and he has some, I call them, hiccups in his life. And I just felt that I wanted to hold myself accountable. But the real purpose in writing the book about my story and putting it out there is because I know other women struggle with people pleasing for myriad reasons. Women are not raised or weren't raised. I think nowadays there's more focus on young women finding their voice and kind of speaking out. But in the era that I was raised in, that was not common to be kind of schooled in how to speak out. And both my parents were people pleasers, super nice people, but I just didn't learn how to be assertive and I didn't know how to do it. So I felt like I had to share my story because that's how we learn. We're wired for story. And I knew that other women would see themselves in what I wrote and kind of have their own moment of personal growth. So the title that I ended up with is Growth and the subtitle is A Mother, Her Son and the Brain Tumor They Survived. Because as all moms know, if your kid is suffering, you are suffering along with them. So I really. My son survived his brain tumor, but I survived it too. We're both survivors. And the end of my book is about post traumatic growth, which my son actually was the one, Matthew was the one who introduced me to that concept. And we both feel that through all of this we have grown tremendously. And part of that growth for me is finally, once and for all, I really started tackling my people pleasing in kind of a concrete way. And I truly feel that I am a different person than I had been before this book journey.

Thank you so much for getting your voice out and sharing it in this way because you're right, we're wired for story. I love how you said that and people are able to see themselves right. And what you wrote. And I love how sometimes we talk about things like they're separate. There's the book and then there's the people pleasing. But when we can actually look at it like it's connected, it's because of this is when you were finally able to make a change that was able to then be something that you took in your life.

Yeah, I mean, I've been in therapy over the years And I've known for years that I was a people pleaser. And I tried at different points, and I talk about this in the book a little bit. I try to speak up, and I. It just kind of backfired a bunch of times, and I would just give up and kind of go back to who I was. But both the process of writing the book and so I would write something, and I would go back and read it, and I was kind of like, holy moly. Did I really say that? Was that really who I was? And it was. So Harley was reading it, and then partly. I wasn't a writer. I wasn't an author. So I had to kind of put myself out there, build some platform on social media, get some essays out there. So it was a process of kind of exposing myself on social media. On Facebook especially, I would write little stories about how hard it was during COVID to ask someone to put a mask on if I was uncomfortable. That was just super, super hard for me. So I really just lay myself out there, and I had to confront it. Like, it was just. Well then saw me as a people pleaser or they knew that that was what I struggled with. And so then it was like, I can't hide anymore. I'm out. I have to do something about it.

I totally get it. I'm a recovering people pleaser. But it still gets activated. Right. So I'm on the airplane a few weeks ago, and I have to go to the bathroom so bad, and I'm in the middle seat, the person next to me sleeping, And I felt so bad. And I'm sitting there. I could hold it in. It's three hours going through the whole. I'm like, what are you doing? We're on an airplane. And so it just showed up. I'd love to know what that moment was for you. When you're caring for your son, you're seeing what's happening, and you're scared to advocate or not speaking up or whatever that is. How did you even become aware that that was happening?

Yeah, I would say that it was a process. There was a moment in the book where I was just at my lowest in terms of frustration with this child who had always been just extremely active and energetic. He was probably ADHD from very early on, although he was never a behavior problem, and he was very bright and he could focus, so he never needed to be treated or diagnosed or anything. But when he started just deteriorating in maturity level, cognitively, motor skills, everything. And I felt that something was wrong. But all the messages from outside were coming at me saying, oh, no, this is just a developmental stage, that type of thing. So my frustration was just at a breaking point. And there was one moment when I won't give the details, but it's in the book. When I nearly broke. I nearly hurt Matthew because of my frustration. And. And I thought, this is not what I want. This is not the relationship I want with my son. This is not who I want to be as a mom. So I got us right into counseling. So I think that was one moment when I realized something's wrong and I have to take control of this. Then our psychologists that we worked with really kind of gave me little nudges to finally own my belief that something was wrong. And I just kind of very slowly started being more firm and in my sickeningly polite way, pushing the system to respond. And it wasn't until he got an MRI that they, you know, it was obvious that he had a tumor.

And then this was the moment that you're like, okay, now I don't have a choice. This is what I'm doing.

Yeah. But here's the thing, and I write about this in my book. The most beautiful fairy tale story would be, mom can't speak up, Son gets sick, mom becomes a warrior. And I was a warrior for a little time there. I was a worrier enough to get him diagnosed and get him started in treatment. And then. And this was the hardest chapter to write because, again, I'm all about vulnerability. I have to admit what I did or didn't do, because I want other people who might have struggled in the same way to know that they're not alone. So once he was diagnosed, I went back into my show because I didn't need to be assertive anymore. He was diagnosed. The doctors were responding appropriately. My family members, including my wonderful husband, who we're still together, we've been married going on 42 years, he didn't see it. He didn't listen to me, and I didn't speak in a way to make him hear it. So, of course, now they saw that I was right, so I didn't need to be assertive. And I was exhausted by that point, so worn down from this ordeal that I didn't have the strength to continue that journey of speaking out. So I really went into my shell for a long time. I would say another 20 years. I think of my son's recovery as a 20 year recovery until he really kind of got on his feet again. And then it was again the process of the book that Made me confront and say, okay, I don't want to be this person I've been in the past 20 years and the 20 or whatever years before then. I want to be a person that I'm proud of, someone that is able to speak up for herself and her loved ones.

And so then the process now of you wanting to write this book, and it took 20 years to write it. So how did that happen? How were you able to finally get it out?

Oh, yeah. What a journey. I'm sure you've heard this from other authors. It's just a whole new learning experience. So I had started writing. It was around 1999 or so. So a couple years after Matthew was diagnosed, I took some memoir writing classes and joined some writing groups, and I wrote for a number of years. And then Life with the Brain Injured Child just took precedent over the writing, and I just. I couldn't do both. So I actually left my job at one point to really kind of mentor Matthew through high school and into college. He did graduate from college, but he needed a lot of support. So I put it aside for a while. And then in 2016, I had some kind of minor health issues of my own, and I needed to leave the job that I was at, a career that I loved. And in that moment, I mean, I left a doctor's office realizing I couldn't work anymore. For a while, I had to. It's kind of chronic illness issues, autoimmune type of things. I thought, I have to work on my health. In that moment, I realized the universe was giving me a gift of time to finish the book that I hadn't touched in probably 10 years. And I did. I went home that day and I got out the old computer files and I got started, and I just became a sponge. I just. Fortunately, we had Internet, which we didn't have when I was first writing, and I just became a sponge. I learned everything I could. I took online classes. I'm trying to think. I must have taken some live classes here and there, but I found writing groups. I connected with people, and I just kind of began. I didn't even know how to use Facebook before that time, so I got on Facebook and Twitter and Instagram a little bit and just kind of worked the process, as they say. And I really. I hoped to get an agent. So I queried, that's the process of how you approach an agent. I queried 85 agents and got a little interest, but no takers. Nobody who wanted to try to sell this book. So then I approached small Presses and I got an offer of publication pretty quickly and again. And I just worked through their process of getting this book out there and it became a thing.

What do you think gave you the tenacity to do that with the agents? I'm just thinking of the book being written as hard enough and then you're doing the agents and that whole thing. How did you do that? And rejection and what came over.

Yeah, yeah. It's interesting that you use the word tenacity because that's not a word that I typically associate with myself. So first of all, thank you. And second, I do think that I have earned and gained those type of characteristics, that I was tenacious. Well, I think I had heard from other authors that it's not surprising for new authors to go through a hundred or a couple hundred agents before they get a yes. So I was kind of prepared mentally. I was managing my expectations. And I had decided I was going to query 100 agents before I moved on to plan B, which was going to be small presses. And finding the right agent is a huge process. You have to research what type of books they've sold in the past and who they represent and read some of the books that they've represented. And it's a lot of research and it's somewhat a moving target because sometimes agents will be closed to new queries. And I just kind of had lots of spreadsheets and set some priorities about who I was going to approach and learned how to write a query letter, paid to have the query letter critiqued and edited, and did another query letter and 20 query letter drafts later, had something to send out. So it was a process. But I'll answer your question about how I dealt with rejection. So again, I knew from other authors that I connected with a lot of times in different Facebook groups, I knew that rejection was part of the whole process and that it was going to be difficult. So I thought to myself, okay, how can I prepare myself to not let this rejection get me down? So what I decided was when I got an email back from an agent, often it was just a form email saying thanks but no thanks. I printed it out. I bought some bright pink and kind of rose colored paper, printed it out and I made an origami rose from it and I stuck it on a pencil and I put it in a little vase and pretty soon my vase got full. So I went to a bigger vase and that vase got full. So then I taped them onto this chain that I just hung down a wall and I had a long, beautiful Chain of Roses. And I wrote about it on a couple different places. And it was just a way to make it fun. It's not, you know, fun. It not hurt so much. Yeah.

So good. You've kind of made a game out of it in a way, but a visual representation. Yeah. And it's almost the opposite. It probably was really good for you because coming from a peeing on people pleaser and then putting yourself out there in that way, you're starting to become the person that you're wanting to be just by being willing to put yourself in those situations.

Yeah. And just approaching agents, I mean, that was really intimidating. And even though it was not a face to face type of thing, just putting myself out there was certainly a learning experience, and I got much more comfortable with it.

So now you are writing the book. And then you mentioned exposing yourself in a new way, because you're not just writing a book about your son and what he was going through. You were writing through really vulnerable, open things that could have caused judgment or could have perceived people to look at you a certain way. How were you able to tap into that, to be able to open into that part of you?

Yeah, well, I had a critique group that felt really safe for me. We were all working on memoirs. In fact, we started with about seven people, and a couple people dropped out. And one person came in, and we ended up with a core of four. And I'm happy to say, one by one, we have each gotten our books published. So I was the first, and then two more recently and one more whose book is coming out in February. So that's really cool. We call ourselves Writer's Tears. That's the name of our A Lot of Tears writing. And so I think I was in a really safe place. So when I brought my writing to them for their critique, I felt safe doing that. But I think it was also just kind of my personal integrity. Sometimes I would write something, and then when I would go back to revise it, I'd look and I would be like, that's not it. That's just. It's not deep enough. It's not telling my truth. That's how I wrote it when I was afraid to be really vulnerable. And again, I thought, there's some woman out there. I know. I've actually heard from women whose children have had the same tumor my son had. I've heard from women whose kids have other type of illnesses. I've heard from women who don't have sick kids, but relate to the people pleasing. So it was the integrity. I thought some mom out there might pick up my book and she might really struggle with the people pleasing. And if she reads, if I have glossed over what I did, it's not going to be helpful for her and she's going to feel more alone because she's going to think, oh, I thought I was reading someone who's been like me. But she really. She didn't have it as bad or it was easier for her. No, it wasn't easy. I want that mom to know I get her and I want her to feel that she gets me. So it wasn't worth me doing it if I wasn't going to be completely honest.

Yeah. And so you were able to tap into your message of what you were doing and the truth of it. And that was more important than what anyone would say.

Yeah, yeah. And I did worry about it. I remember telling friends I really thought that I was going to be excoriated from a mother. What mother can't stand up for her kid when her kid is sick? I really thought I was going to be excoriated. And I was prepared. As much as I could be. I was prepared for that. And I have to say that has not happened. So I don't know why, but that has not happened. I've had only support. And I think that actually just goes to say how much women relate to this whole topic.

Yeah, that's what I'm asking. Because what you're doing is literally the most important thing out there. Because so many people are stuck in whatever it is, self judgment, shame, doubt, whatever it is, and then no one hears it and no one can ever know. And so then we have no idea how to even connect on any level because it's staying stuck inside. And so by you sharing it, it's just like you said now other people are able to see themselves in you.

Yeah.

Through this story.

Yeah. Yeah. That was my goal. And I'm confident that I have written the book that I wanted to write. And all I can say is that people relate to the vulnerability. And you wouldn't think it would be this way, but kind of exposing my vulnerability has only been positive for me.

What advice would you have to someone who maybe they have a story in them or they're wanting to share something, but they're scared to put it out there or they're scared to put themselves out there for fear of all the things that could come from that.

Yeah. I would say if they're writing, start writing with only yourself in the room. Don't imagine Other people's voices in the room with you. You are writing in a space where nobody's voice enters, and you are writing only for yourself. So you can be as honest as you want to be. Because deciding what to share is a second step. So get it down on paper first. And I just think there's so much growth in doing that because. And I think I write about this in the book. I've written about this other places. My mom was a big journaler, and when I was going through this with my son, she would say, karen, you got a journal. You got a journal. And I would try, but it. It just. It didn't do anything for me. There was no growth me. There was no growth in the journaling. What I found when I became a writer is the growth is in the revision. I write it down, I let it sit. I come back to it the next day, the next month, the next year, whatever it was. I guess I could say the next decade. And then I would look at it, and I was kind of like, then that's where the light bulb moments happened when I went back to the revision, and that's when I learned about myself. So I would say to someone, write it first. Get it down. And when you go back to it, that's when you can dig into your truth. It might even take you a few times. And then decide after a while, decide if you want to put it out there. Maybe you don't need to put it out there. Maybe you've learned what you had to learn just through the process of writing and revising. But if you do, just get a lot of support, get feedback from people you trust to question, kind of push back a little bit. Are you sure you want to put this out there? For me, it was my husband. He's kind of one of my beta readers, so one of the first people to read the things I'd written. And many times he'd be like, are you sure you want to do this? And I gave it some serious consideration. And usually I decided, yes, this is what I want to do.

What about people that are in the process of finding their voice and then using their voice? What advice would you have for them?

One thing that I did that I started doing was finding role models, and I hadn't even set out to do it, but I have a friend, her name's Ruth, and she was getting her kitchen redone, and she's just the kindest, most generous person. I just love her. But when the guys messed up the tiling in her kitchen, she just Said to them, hey, this isn't the way it's supposed to be. And I was like, wow, you know what? I think I could do that. I think I could use that tone. I think I could use those types of words. Because growing up in a home, I won't say that we never had any conflict, but my parents, they did so much people pleasing themselves, I somehow just missed. It wasn't built into me how to find that tone and figure out those words. Because I always felt like I was being rude or mean or whatever. And so look for role models is one thing that I found really helpful. And then another is visualization. So if there was a time that I felt that I really wanted to speak up, I would picture myself doing it. What are the words that I'm using? What are my gestures? What's my tone? What's going to happen? Prepare myself for a good reaction and a bad reaction. And the visualization was just really helpful for me. And sometimes I would even practice in a mirror. I look in a mirror. Oh, excuse me, would you mind putting a mask on? I'd be more comfortable. It's so easy. I was making it to be such a big deal in my head, but I found through the practice that it was actually usually not a big deal.

And yeah, let's talk a little bit more about that with the people pleasing side of things and what you've learned and what could help other people.

Yep. So one thing that I found helpful was to come up with alternatives to saying no. And for me, one of the hardest times for me to speak up is when I feel put on the spot. Let's say I'm out to lunch with someone and they say, oh, I gotta drop off my car to the blah, blah, blah, can you give me a ride home? And maybe I had other plans, maybe I have to do something else, but I would feel. So I put their priorities above mine. So it was hard for me to say, no, I can't do that. And I still know can sometimes be harsh. It's a powerful word and I think women especially need to learn how to use it. And it's a complete sentence. No, it's perfectly fine on its own. But if you find yourself kind of shying away from that, a couple of my favorites are, I'm not really comfortable with that. Now, that wouldn't work if someone was asking me for a ride. I'm not really comfortable isn't applicable in that setting. But I could say something like, well, let me think about it, let me check my schedule. And I'll get back to you. So that's another one. Or let me think about that. So come up with alternatives to saying no, because it. You're just expanding your vocabulary for that.

And what do you think about someone in terms of advocating for themselves or for someone they love? What would be something that would be helpful?

Well, for one thing, I would read up about medical gaslighting, because that's really what my book is about, a big part of it. It's kind of the collision of medical gaslighting and people pleasing, because you put those two together and it's just a remedy for disaster. But read up about medical gaslighting, and it's unfortunately very common and especially with women. And medical gaslighting is when a health care practitioner dismisses your concerns or tells you it's all in your head or doesn't want to believe what you've said to them. So be aware that that happens. And then again, visualize speaking to this person that often we see them as people in positions of power. The people with the stethoscopes and the white coats are in that position. Visualize yourself talking to them. If you have a medical appointment, they always talk about coming in with notes. I would say come in with three bullet points. What are the three things that you really need to be heard about? Practice, go to that mirror. Practice talking to them. Be prepared for if they say, oh, that's not really happening, or, oh, it's stress, or something like that. Be prepared with your comeback and keep going back. I think one of the things that I didn't do with my son, I didn't go back as quickly and as frequently as I could have. I did keep going back to the pediatrician because she was our pediatrician. But if I had gone back sooner and more often, I think the message would have gotten through more quickly.

Wow. I never even heard of that term. I mean, I've heard of gaslighting, but not medical. That you brought that up because. Yeah, I'm thinking of times in my life when that happened, and I'm like, oh, wow, that actually is good. And then what you're doing is you're normalizing it so you don't feel crazy.

Right, Right.

Yeah.

Yeah. Well, I'd heard of the term gaslighting, and I think I had heard of the term medical gaslighting at the point my book came out, But I wish I had been aware of it a little bit sooner because I would have liked to have included it in the book, but it was a couple months after my book was out, I must have read something and it gave me a different reframe on my book where I realized that that really was what captured what was going on was this medical gaslighting.

I think what you're showing though, is how as you get your story out of you, then it evolves because it's now it's not stuck. You get to extend and learn more about what you're even doing. That's what I love about doing all of this, is you're pulling it out each.

Yeah. And the opportunities continued to come to me. I remember, I think I talked about trusting the process or following the process. And I remember another writer I was, I don't know, worried about, this is before my book was coming out, worried about getting an agent or getting it published. And someone said to me, trust the process. And at the time I thought, well, I don't know what the process is. What is it? And I was actually doing the process. I was learning and following some steps. I got a Facebook account, I wrote some essays and got them published. I got myself, created a website. All those little steps, I did them and eventually I got my book published. And I think since my book was published, like you said, it continues to evolve. So, for example, this is just so cool. So the psychologist that treated my son, I had tried to find him. It had been years since I had seen him. I had tried to track him down when I was working on my book in the latter years because he was one of the good guys and I wanted to let him know how much we appreciated what he did for us. And I just couldn't seem to track him down. And then after my book was out or around that time, I think I found him on Facebook. And I don't know if he hadn't been on before, so I told him about my book. He came to my book launch, was very excited, bought a few copies, and I recently just started collaborating with him. So we're going to do some programs at libraries in discussion about practitioner patient communication, which I just think is going to be so powerful because we're two people that actually experience that dynamic. And he's a psychologist, so I want to hear from him and. And we've had some good discussions so far. I want to hear from him and I want people to hear from his position. What exactly happens in patient practitioner communication that the communication breaks down or maybe it doesn't. So this is something I never would have predicted or even thought about. And it's just. It's great opportunity that I'm really excited about. Yeah.

And it reminds me too, of Laura, where she wrote the book and then we've done the bucket list and then we're doing it for Modern Prairie. There's all these connections. It's kind of is a lift, liftoff, and then you get to keep kind of extending what this is and what your path is.

Yeah.

Well, I'd love to hear what your number one piece of advice is for people on doing the thing.

Doing the thing? Yes, I think I would say doing the thing. I'm going to focus on the people pleasing because, I mean, lots of people have fought against their own people pleasing, but lots of people have written books. So I think there's some material out there to help people do that thing. But in terms of the people pleasing, I think the biggest thing is to explore. So if your listeners who are hearing me talk about people pleasing, if they're getting this little niggling uncomfortableness or maybe these little light bulbs going off, that means that this is something that you might want to work on. So do some exploring. Google it and read some articles about people pleasing. Read some personal essays. Again, we're wired for stories and so read some stories about women and people that have struggled with this. On my website, I have maybe about a dozen blogs specifically about people pleasing where I share some of my experiences. So really explore this whole concept and see if it rings true for you and if it rings true for you. Continue the exploration by putting yourself out there, maybe doing a little writing and then coming back, return to the writing later, whether you actually revise it or not. But read it again and see what truths are there for you and start putting yourself out there in some safe places with friends or family that you really trust. Put it out there. Like, I think I might be a people pleaser sometimes and see where that conversation leads you. So I think you just want to. I guess how I was with my book, getting my book published, I became a sponge. Do that with people. Please. Become a sponge and learn as much as you can and that will put you on your path to make some changes.

Yeah, I used to call it go down the rabbit hole, but I love the word sponge because you're just bringing it all in. That's such a good way to put it. Well, please share it with everyone where they can find your book and follow you and all the good stuff.

Yeah. Thank you. Well, My website is www.karendevanas.com and it's K A R E N D E B O N. I S All those consonants are hard to understand. And so on my website I have links to purchase my book. I have a tab for people pleasing. Feel free to scroll around and see if you can relate to my story. Most of my social media is some version of karentobanes.com so I'm on Facebook mostly X a little bit, Instagram a little bit. So I'm easy to find. Pretty much, yeah. I know that not everybody has the budget to buy a book as much as they might really, really find it intriguing. So if that's the case for your listeners, I would suggest to them go to your library. If they have it, ask them to order it. I didn't know that was a thing until coming out. You can actually some libraries will have a link on their website where you can request that they order a book for their collection and then you just take it out. Sometimes you have to go like my library. You just, you go there in person or you give them a call and I say I'd like to recommend a couple books. So there are other ways to get it too. Wow.

Well, thank you so much for coming on. This has been incredible hearing your story. I appreciate the work you're doing.

Yeah, thank you, Stacy. Well, I'm just so grateful for this opportunity and for you guys.

Thanks so much for joining and do the thing. Don't wait for opportunity, create it. And hey guys, have you checked out my Facebook group yet? Go to do the thing community.com and I also have my new community, which is the collaboration group, do the Thing collaboration dot com.