The pain we’ve experienced alongside our disabled children is often gaslit by others. Responses like “Oh, it’s not that bad…” and “At least….” Or “You should be grateful that….” are all forms of toxic positivity. Just like that, our pain and struggle are minimized.
But the same can happen internally. When we’re struggling and our inner voice berates with “you’re so weak” and “it’s really not that bad” and “so-and-so has it so much worse than you do.”
Both are harmful and both need to stop.
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Madeline Cheney 0:00
I think true, authentic gratitude can be super healing and wonderful when we're feeling low and we have this pain that we're dealing with, but when it's kind of shoved in your face like this, it feels more like a shutdown rather than that healing feeling of authentic gratitude.
Madeline Cheney 0:19
Hey, you're listening to The Rare Life. I'm your host, Madeline Cheney, and today I have a solo episode. I want to talk about something very near and dear to my heart. It's been an issue I've struggled with and my guess is that I'm not the only one who has. So of course, I had to record an episode about it. But first, I want to give a huge thank you to Brittany Steitz and her family for generously sponsoring this episode. Brittany and I connected on social media when her son, Logan, was suspected of having the same very rare syndrome my son has. He tragically passed away at 26 weeks gestation, and this sponsorship is dedicated to him in loving memory. She said, "The Rare Life was a cornerstone resource for our family as we were navigating a rare and complex medical diagnosis. While the medical community was full of data, this podcast provided us with real day-to-day insight and hope for the challenges and beauty that come along with genetic syndromes. We are grateful for the families that have shared their stories on this platform. This podcast has opened our eyes in so many ways and we are honored to support this mission." Thank you, Steitz family. If you would like to sponsor an episode, head to the website, The Rare Life Podcast.com, to fill out a contact form, and in the drop-down menu, just select the sponsor option. If you would like to make a smaller donation, you can do that on the platform, Buy Me A Coffee, and links for both of those options are in the show notes. All support is so appreciated!
Madeline Cheney 2:28
Okay, so I want to talk about gaslighting and our tough experiences with our disabled children, both from those around us and happening within us. First of all, let's define gaslighting because I feel like that's kind of a buzzword, but I wanted to get a better handle on what exactly it meant, and I'm sure there are some of you who are like, "What does that mean again?" A definition I found online says, "The term gaslighting refers to a specific type of manipulation, where the manipulator is trying to get someone else to question their own reality, memory, or perceptions." And they say it's always a serious problem. In this context, I'll be talking mostly about things that cause us to question our perceptions of what's going on. In every case I'm going to explain, it is with good intentions because no one's sitting there trying to convince us that our reality is not our reality on purpose or that we're perceiving things incorrectly. Most of us are surrounded by really loving people that accidentally gaslight us or we gaslight ourselves, and not on purpose, obviously.
Madeline Cheney 3:52
In this episode, I'll mostly be talking about our perceptions being put into question or ways that our pain or our realities are really minimized and not taken seriously by ourselves and those around us who love us. I will first talk about how we are gaslit by others and give examples of that. Then I want to dive into how we gaslight ourselves because personally, I am no psychologist and I'm not pretending to be one, but I personally believe that's probably even more damaging than being gaslit by those that we love. So let's dive into people gaslighting us. When I was thinking about this episode, I thought of how the key part of this is minimizing. It minimizes what we're going through and it doesn't take those things seriously, our pain seriously, and I was realizing that when someone wants to minimize our pain, it's usually coming from a loved one and it's because they love us, they want to shrink it, they want to literally minimize the hard thing that we're going through. While it's not helpful and makes us feel terrible, you can see where they're coming from on that. I have found myself doing that, especially with my kids, where if Wendy hurts herself or she's really sad about something that happened at school or whatever, I find myself trying to cheer her up, but in a way that is minimizing what she's going through, like, "Oh, no, you're fine! Oh, let's go do this thing real quick. Let's distract you by doing something fun." Or, you know, "Oh, I'm sure it wasn't that bad. Your friends still love you. You're awesome. Let's go do this over here." And I'm not being an evil mom by saying that but obviously it's a lot more empathetic and caring to say, "Oh, yeah, that hurt, huh? I can see the blood on your knee, that must make you really sad." And although it usually elicits a bigger reaction from her, afterwards we feel so much more connected and I feel like a better mom. I think it's because although the instinctual reaction to seeing someone we love in pain is to try to shrink it and minimize it, what really connects us and helps that person feel seen is sitting in that pain with them and acknowledging it and saying, "Yeah, I see that that sucks." And not necessarily trying to just fix it right away.
Madeline Cheney 6:34
So when we're sharing our pain, our really tough situations about our children with disabilities and medical complexities and things like that, a lot of the responses that do gaslight us come from toxic positivity, which they say is a form of unintentional gaslighting, which makes so much sense to me in this context because these are our loved ones, they're not trying to make us question our perception of our reality. They're not trying to pull the wool over our eyes, they really do love us and so it's unintentional. And for those who are like, "Oh, what's toxic positivity again?", which is another big buzzword right now, that is defined as dismissing negative emotions and responding to distress with false reassurances rather than empathy. So, "You're fine! Get up, your knee isn't that bad. Let's distract you." It comes from feeling uncomfortable with negative emotions. It is often well intentioned but can cause alienation and a feeling of disconnection. I know all of us have experienced this, especially regarding our children that are disabled because there's this huge discomfort, you can see it in people. I remember, especially in the beginning with Kimball when I would talk about not doing well, like the "Oh how's Kimball and the NICU and stuff." And I'd be like, things are really hard, and you could see them just kind of shut down and try to hurry and do a quick fix or a Band-Aid slap, or "Let's hurry and end this conversation because this is really uncomfortable." So I think a lot of us learn to sugarcoat our answers or to straight up lie because of these kinds of responses that we get when we're just being honest about our situation, which really sucks, it fosters a feeling of alienation and disconnection. I'm sure a lot of you have had relationships with your loved ones and friends impacted for the worse because of this kind of response that's really natural in our society. So I wanted to go through and share some of the biggest types of responses that fall under this category of toxic positivity, which is a form of unintentional gaslighting that I think is probably most common that we receive when sharing our heart. All of them were from August 2021's Question of the Month, which was, 'What Not to Say to Parents of Disabled Children.’ 'Don't minimize our pain' is basically what we want. Alright, so the first one that just gets me is, "At least..." or "It could be worse because..." or "Oh, aren't you grateful? XYZ." And I was thinking, "Man, why does this irk me so much?" I did hear this quote that said, "No good sentence begins with the words 'at least'. Maybe it's a little extreme but this is something that bothers other people too. I think one reason is that it makes me feel like the person receiving my pain that I've been sharing is saying, "You don't really have the right to struggle with this. I mean, look at all the things that you have. Look at all the good things about your life. Like, do you really have the right to feel bad right now? No, you're pretty wimpy." That is something I am so sensitive to, is feeling like someone's calling me weak or I'm overreacting or being too sensitive. Personally, I hate that. Everyone on this earth has a right to struggle, regardless of how blessed we are or regardless of all the things we do have. I do think gratitude is an interesting one because I think true, authentic gratitude can be super healing and wonderful when we're feeling low and we have this pain that we're dealing with, but when it's kind of shoved in your face like this, it feels more like a shutdown or like they're saying you don't have license to struggle with this, rather than that healing feeling of authentic gratitude. I think it feels a little bit forced too, like, don't force me to feel grateful, I'm not feeling grateful right now. I just want to feel mad or sad or whatever. And I think that gratitude that we come to on our own that isn't shoved in our faces by other people, can be so tender and so meaningful. It'd be after you feel safely listened to and validated for your pain that you're going through. I think often you'll come to that conclusion anyway but it'll be meaningful and authentic and tender. Just hugging my children and being like, "Oh, I'm so glad you made it here safely." Or, you know, being embraced by Justin, my partner, and being like, "Oh my goodness, I'm so grateful for his support." But that usually comes after being able to safely vent and share the hard that's going on and not having all my blessings and the great stuff being shoved in my face as a response to my pain. So yeah, that's a big one for me, is the "At least..."or "It could be worse because..." and "Aren't you grateful..." Let us come to that conclusion, please do not shove it in our faces.
Madeline Cheney 12:31
Another one I heard from a lot of you about is a kind of cheap write off of, "I'm sure they'll be fine." Or "I'm sure you'll be fine. In one way or another." That could be also, "Oh, I have a cousin's friend's neighbor who also had a disability and they're a professional ice skater now, and your kid will be fine." Things like that, that just kind of come out of left field, and you're like, "You don't know if it's gonna be fine. I don't know if it's gonna be fine. The doctors don't know what's gonna be fine. Like, no one knows it's gonna be fine." But what it really feels like is a kind of cheap ride off or an abrupt ending of like, "I can't handle hearing this right now so let me slap this band aid of "I'm sure it'll be fine" and I'm gonna move on, go do my grocery shopping or whatever. I feel like it's a big shut down and we take note of that, we take note of who is willing to listen, and who seems to be open to that and who slaps the "I gotta go. Let's end this real quick. I don't want to hear this. This is painful for me to hear." I feel like that's a big one, too. Okay, so the last one, and I know this one is really said a lot and I know a lot of parents have a problem with hearing this one but it is, "God gives special kids to special parents," or "I don't know how you do it," or "I couldn't do what you do." This sends the message that we're somehow more equipped to handle what pain we're going through and we're not, so I think that feels really invalidating because it's like, well, then obviously, you don't know the depth of my pain. If you think that I'm more equipped to go through this then you are, and you're not willing to entertain what it might feel like for me, that is very minimizing. It's isolating because you think we're some kind of rare breed. All three of these responses are usually coming from a place of love, of someone who doesn't like seeing us in pain, or someone who might want to believe that we're more equipped than they are to be able to handle this. But the fact is that these are all minimizing our pain in a way that's really painful for us and it's gaslighting our situation and the perceptions that we have of our situation and maybe questioning like, "Oh, are you overreacting? Oh, it's not that bad, calm down." No one wants to be told that when they're in pain.
Madeline Cheney 15:10
I think what a lot of us really want is validation and empathy. Sit with us and be willing to be pained with us, I think that is so meaningful. So responses are more like, "That must be really hard for you." And, "Man, I'm sorry you're going through this." Or, "Man, I'm sorry your child's going through this." Or, "This really sucks right now. I'm going to support you by ____ and *specific offer*," I’ll say, not just "When you need me." Well throw that in there too. I feel like a great illustration of this is in the Disney movie, Inside Out. There's this scene, you may remember, with Bing Bong, Riley's imaginary friend that she's basically forgotten and he's really sad about it. He sits down and he just cries and cries and refuses to move on to show Joy and Sadness, where to go, and they need to catch the train or whatever it is they're trying to do. Joy sees that and she tries to make silly faces and she jumps around and does a dance, and she's trying to like cheer him out of it, which I think a whole lot of us have done with the child-scraping-the-knee thing, we get tempted to do that with our loved ones, but then Sadness sits down next to him and validates him. That scene always gets me, it is so tender. Where Sadness says, "Wow. That must be really hard for you. That's sad." Joy is like, "No, no, no! Stop doing that, you're making it worse!" But Bing Bong opens up about it and he talks about it for a while, about how sad he is and they just sit there feeling sad together. Then he's like, "Okay, let me show you where to go." And Joy just looks at Sadness, like, "What just happened? How did you do that?!" I think that right there is a really great illustration of something like, "Be sad with us." That feels so connecting and it feels really validating and you're showing us that, yes, your perceptions of what's going on right now make sense. I would probably feel a similar way too. There's a reason that that's what therapists do, they sit there and validate you the whole time because it is really, really helpful. Especially coming from a loved one or friend, to hear that validation is so, so wonderful.
Madeline Cheney 17:54
As it turns out, I feel like the same type of approach is helpful when we do it to ourselves. So I'm going to shift gears over to when we are gaslighting ourselves. I think what we do need is to sit with ourselves and to be sad and to say, "Yeah, I can see why you didn't want to get out of bed this morning, Mads. Yeah, this is hard and it makes sense that you're feeling this way. And yeah, let's just order pizza for dinner because yeah, this is really hard." We're the ones closest to ourselves. I think when the dialogue is less compassionate, it can be really, really harmful. I've experienced this firsthand so I'll share all the juicy details on that. But I think a lot of times, the self-talk and attitudes, especially for me, are things like "Why aren't you over this yet?" and varying variations. "Why aren't you over this yet?" "Why are you still so sad about this?" "It's not that big of a deal." "So and so has it worse," or "You've had it worse." I feel like that is a really big one, just gaslighting ourselves because someone else has it worse. I feel like this especially relates to if you're involved on social media and you read about other parents talking about their child and what they're going through together, it's really easy for us to see that and be like, "Well, that person has it way worse than I do." Or even listening to podcast episodes, "Well, she really has it tough. Why am I struggling so much with what my kids are going through or what we're going through. This isn't anything compared to that." I think that can also silence us so that we don't feel as comfortable sharing. If I'm sharing, "Wow, I hate putting eye patches on my son because he's really sad when he has them on and he talks about how he can't see and he wants it off and all that." But sharing that kind of thing sometimes feels a little squirmy or guilty because I'm like, "This is nothing compared to this other person. And this is nothing compared to what we were going through together a couple years ago." I think comparisons like that really feed into gaslighting ourselves because that voice pops into our head and, "Well, but is it really that bad because this person has it worse." But you know what? It doesn't matter if someone else has it worse, that doesn't make it any less painful for you and what you're going through. That's easier said than done and I'm not exactly sure what the solution is with that other than just realizing that that's an issue that all of us struggle with, that someone has it worse than every person ever, there's always going to be someone who has it worse, even than the person that you think has it the very worst. That shouldn't silence us, we can still talk about pain, we can still talk about what's hard for us, we can still feel that, and we still have license to feel that, even if someone else has it worse. I'm guessing that a lot of you have felt this way too and in different painful situations with your child where you feel like your reaction is bigger than what the situation warrants, I think that's what it kind of comes down to is like, "Hey, what would make sense in this situation? Well, you're freaking out way too much and we're going to appointments," saying this internally to yourself, "You're freaking out way too much. This doesn't make any sense. It could be worse, your child could be hospitalized again, remember when that happened a few weeks ago? At least you're just going to a follow-up appointment. Why are you unglued right now?" I think a lot of times, when that happens, when our reaction feels bigger than what we decide it should be, there's a judgment made about ourselves rather than just an observation of like, "Wow, I feel unglued right now at this appointment. Makes sense because..." But a lot of times, instead of that, we go to "Man, I'm unglued right now. I'm so fragile, what is wrong with me? I can't handle anything and I'm weak." I think those judgment calls we make on ourselves just make everything so much worse. We're just kicking ourselves while we're down. An example of this that I've noticed in my life, and neither of these are directly related to Kimball and his medical stuff but I feel like they illustrate this point really well so I'll share a couple examples of this whole 'deciding what our reaction should be in relation to what's happening.' And then if it's in line with that and what happens internally for us.
Madeline Cheney 23:17
So when my dad passed away from brain cancer five years ago, it was this terrible, horrible thing. My sister was 11, my brother was 14, there were still kids at home. My mom was young and in love with him and it was awful. It was so awful. I struggled with that, I was really really upset, I was sad, but because my dad just died from cancer and it was super abrupt and it was really sad and everyone was struggling, it made sense to me. I was like, "Yes, of course, I'm struggling. My dad just died from cancer, from brain cancer. That warrants a big reaction." And I'll tell you right now, I'm really upset that my dad passed away and I miss him more every day, but I've never shamed myself about my reaction to that. I can struggle as much as I want and miss him as much as I want, but I've never shamed myself about it or tried to minimize it or say "Why aren't you over this yet?" Or "It's not that big of a deal, calm down, move on."
Madeline Cheney 24:31
Processing that has been pretty straightforward. Not easy but straightforward. It hasn't been messed up by me being mean to myself. So that in contrast to recurrent miscarriage that I've endured, and I know a lot of you know about this, either through Instagram or past episodes, but I have a lot of miscarriages and it runs in my family. To be honest, I'm still definitely grappling with this. It's a little difficult to talk about but it illustrates this point. And this is actually when I realized the danger and the pain and how toxic it can be to gaslight ourselves because I've been doing that about my miscarriages. So a little bit of context, a little background. I have had four miscarriages and I have my two living children. Three of those miscarriages happened within one year, the year of 2020, actually. In October of 2020, I had my third miscarriage out of that set of three and it unglued me. It's been about a year and a half and I still really struggle with it, with that one in particular, and all of them collectively, our future, what that might mean because I'm a carrier for my son's condition and that's probably what's causing the miscarriages, that these babies probably have the deletion. And if I do keep a pregnancy, then they have a pretty good chance of being stillborn and they have a pretty good chance of dying within the first month after they're born. So these are some pretty heavy statistics, and for reasons I'm not going to go into right now because they're not super relevant, I've decided not to do IVF (In vitro fertilization) and just to plow ahead. A lot of people might be like, "Well, why are you even having more kids, Mads?" Anyone would be like, "Yeah, I'm done." Well, I also feel this longing for another child, and so I feel like part of my heart isn't here. Like, I need that child. So it's really a difficult situation if you think about it like that and it has been really difficult. But after that fourth miscarriage, I tried to power through, I was like, "Okay, let's just move on. It's just a miscarriage, just a miscarriage." I was 11 weeks, I wasn't in my second trimester or anything. The day I started bleeding, I had an interview scheduled, but it was with my therapist. I had worked through all my trauma with Kimball and then we'd kind of graduated and I was going to interview her about the therapy, and I did interview her that night. I told her in the episode, "I'm miscarrying right now." And just to illustrate, I was powering through, I was trying to power through and be like, "Okay, it's not a big deal, move on." I could feel myself dragging through that, it was a really big deal to my spirit, to my heart, I felt so undone by this miscarriage.
Madeline Cheney 28:00
I remember after I was done bleeding and I changed the sheets on our bed, the white sheets, I was able to bleach out all the blood that was on our sheets from when I was miscarrying. I put them on the bed and I was like, "There, now it's all clean. I'm so proud of myself for getting those huge stains out of these." And then I just lost it. I just started bawling like a baby because I was like, "Oh my gosh, my baby's gone. I can't. I erased this baby. I have nothing else left of this baby that I felt so connected to." My husband was standing there when I had this huge reaction. He was kind of scared. He was like "Madds, are you okay?" And he held me while I just cried on him. He was like, "Maybe you need to go see Rosey, your therapist, again because it's been a whole week. Why are you still so unglued about this?" And I'm not trying to like bash Justin, he was just expressing concern. But that right there was a huge turning point where I was like, "Oh my gosh, what's wrong with me? I need to get over this." I think that huge reaction was scary, too because again, I was like, "It was just a miscarriage. I feel like I'll never be happy again. I feel this huge amount of grief and pain right now and this is way bigger than I think should be appropriate for a miscarriage." That's kind of how it went on, for months. I was just faking it and trying to put on a happy face like, "Oh, it's okay," because I was so afraid of struggling again, like I was with Kimball during that first year, I felt like I was kind of slipping back into that and I was like, "No, no, I worked so hard to get back to this place. I have a podcast and I'm doing great and I'm happy and I'm over it," but all of a sudden I was thrown back into this intense grief. I just tried to power through it. I finally did meet with Rosie because I felt dead inside and I felt a lot of depressive symptoms, like sometimes I just didn't want to get up off the couch and I didn't have energy to take the kids to the park, and things like that. I just kept telling myself, "Get over it. Why aren't you over this yet? It's not that big of a deal. Your child wasn't stillborn, they could have died as a baby. Look at these other people that are struggling, that makes sense for them. Why are you so wimpy? Why are you so weak." And again, I was kicking myself while I was curled up on the ground. And, big reveal, it didn't help. In fact, it screwed up my processing and my healing. Working with my therapist, we worked for nine months on this. When we ended, I still was not over it and we had concluded that it was this self-talk that I had, that I was just so disgusted with myself for not getting over it, and minimizing what I was going through. When we realized that that's really what was at the very core of this, I was so disgusted with how much I'd struggled with this, and I still was struggling with it. It broke my heart. I was like, "What have I done to myself, what have I been doing to myself. I should be my own best ally but I've been so mean to myself about this because I decided that my reaction and my deep, deep pain was weak and that it didn't make sense for what was going on." But the fact is, it comes from our love. When we're struggling with these things, especially related to unborn children, like it was for me or for your disabled children or whoever, so many times that is grounded in love, the deep love that we have for them. And it's not weak. It's love. It's not weak, it's just human. So that was a huge, huge wake up call to me, to stop gaslighting myself. Like, "Yes Mads, this is a big deal, it is scary, it makes sense that you don't want to get out of bed today." I think validating ourselves the same way that we would want loved ones to validate us, to shift over from, "Why aren't you over this yet?" And "It's not that big of a deal. So and so has it worse," to "This is really hard for you." And "I'm so sorry you're going through this." And "This really sucks right now, I'm going to support you by____." Maybe that's ordering takeout or watching a movie snuggled up with your kids, or whatever it is that you feel like you need support from yourself with, that permission that you need. And of course we want this validation from our loved ones, but really the person that we have the most control over and the only control over is ourselves. So I think choosing to have this kind of self-talk is really important and can be very, very changing in the way that we're struggling with different things. I am still working on this, it's been very hard for me to unlearn this gaslighting of my struggle. So I invite you to join me in working on this, if this is something that you feel like you could work on too, please join me. Allow yourself to feel the pain and struggle as deeply and as intensely as it comes. It's really hard because obviously we don't want to feel pain, we want to be on fire, we want to be thriving, we want to be super resilient. But I've learned through study on mindfulness, that true resilience is letting the hard things come, really feeling them, and then letting them pass through us because we didn't resist it, we let them come. Let's practice true resilience by allowing ourselves to feel that pain of whatever's happening. As you struggle with it, just know that you're not the only one.
Madeline Cheney 34:28
There is a link in the show notes for our sponsor, Better Help, who provides online therapy through licensed therapists. And if you use the link to sign up, then a portion of that goes towards supporting the podcast. So check that out if you want, if you feel like you need more support in working through whatever you're working through right now. You can also find a link in the show notes to the episode I mentioned, where I interviewed my therapist when I should not have. If you're curious about that one, I thought it ended up being great but I should have rescheduled that. That is episode 25. It's about trauma therapy, ironically. If you don't yet, be sure to follow me on Instagram at @The_ Rare_Life, and I'll put a link for that in the show notes. Join me next week for episode 90, all about chronic sleep deprivation as a result of our children with disabilities. I know so many of you will relate with this one. Don't miss it. See you then.
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