[00:00:00] Intro
---
Dr. Gretchen: Hello, and thank you for tuning in today. I am interviewing Jayne Mattingly. Jayne is an eating disorder therapist turned chronic illness and disability advocate, author, and body acceptance social media influencer and artist. She holds a master's degree in clinical mental health counseling.
Specializing in eating disorder recovery and body image struggles. Jayne is also newly disabled by her progressive and degenerative illnesses, Ehlers Danlos syndrome, intracranial hypertension, and now a severe allergy to the metal that has been implanted in her body, and as a result has had more than 19 brain procedures and total hysterectomy.
She relies on a rollator, wheelchair, and her service dog, Wheatie. On today's episode, we talk about what body grief is, the seven stages of grief, and strategies to feel better while experiencing grief.
I Jayne, thank you so much for being here with us today. Thank you so much for having me. I'm excited. I'm excited too. We were just chatting a bit before pressing record on how this has been like a year or two in the making and we finally made it happen.
Jayne: I know. It was like, I was in surgeries and gosh, I feel like time has gone so quick, but it's also been like a warp.
Dr. Gretchen: Yes. Absolutely. So we're going to get into your story and talking about grief and whatnot, but before we do, is it okay if
[00:02:37] Interview Deck - what was the best present you ever received?
---
Dr. Gretchen: I ask you a question from my interview deck? Yeah, let's do it. I'm always so excited to see what this question is. Okay. Shuffling. Your question is, what was the best present you ever received?
Jayne: Wow. Oh my goodness. I, like, immediately go back to childhood, right, because, like, those were so fun. But I feel like now I need to answer in such, like, a deep way. What, which way do I go? You could do both. Hmm. I don't know. Oh, God, I'm all nervous now. Um, I'm, okay, want to know what immediately came to my mind?
Yes. Um, I was really, I'm going to go the fun way. I'm going to go the fun route because the rest of the podcast is going to be so deep. remember those I was, okay, so I'm 33. I'm a millennial and I loved animatronic. dolls. So my poor family was like, this is, I'm probably taking this way too literal, but that's okay.
Um, my family was terrified by these gifts that I was like constantly asking for. So these animatronic dolls, like amazing Amy, um, was one of them, I think it was called. like the, basically all these dolls that like would do things like with battery packs. And so like I would have to like feed them like alarms would go off and they'd cry and like they do like somersaults and cartwheels and like I loved dolls that would do things but they were terrifying.
All while like you know Chucky and like all those movies were coming out. So like my older sister was Terrified by these like little animatronic babies and dolls that I was getting. And I was like, oh my God, I love them. And so like, I had all these like robotic dolls under my, like I had like a lofted lofted bed and I was just so happy.
Dr. Gretchen: Uh, it's reminding me of, oh shoot, I don't remember what they were called, but they were dogs and they would walk and then they'd flip and then they'd bark. Is that I had those
Jayne: too.
Dr. Gretchen: Yeah.
Jayne: Yeah. I had so many. And I also had the Barbie that did the cartwheel. Remember the Olympic Barbie? Oh yeah. Oh my gosh.
Yeah. I all had, the little doll that did the jumping on the tr the trampoline. Oh, I didn't ha I didn't
Dr. Gretchen: know that existed.
Jayne: Yeah. I was like, so into these things. So those were like my favorites. I was so into dolls. Anyway. I love that. Yeah. So that's like a more uplifting thing because we're going to get deep.
Dr. Gretchen: Yeah.
Jayne: That's awesome.
Dr. Gretchen: Okay. So, so let's get deep. So first of all, in case people don't know you, they they're not following you on social media or part of everything that you offer. Can you give us a bit of your background of, you know, who you are?
[00:05:26] Jayne's Background
---
Jayne: Yeah. So my name is Jayne. Um, I have my master's in clinical mental health counseling.
I was once, a non disabled person for a long time, carrying so much privilege. I still do carry a lot of privilege. Um, and then about five and a half years ago, almost six years ago, I was realizing this. I all of a sudden became basically really sick. And since then have had 19 brain and spine surgeries and a total hysterectomy in that time and am now a wheelchair user and I use plenty of mobility aids.
I have been diagnosed with, many chronic illnesses, one of which I was born with Ehlers Danlos syndrome, which is a genetic illness. Makes a lot of sense. Um, and I think a lot of people can identify with that with chronic illness, autoimmune diseases and things like that. I'm sure a lot of your listeners are like, yep, putting the puzzle pieces together.
and I, , have been dealing, you know, with a lot of grief since then. Um, but because I am an advocate at heart, and I am a clinical mental health counselor and a coach, I really kind of made my problem my purpose. And, yeah. Kind of hustling through a lot of those things and then realizing that hustling did not serve me.
And so with all of that, I started writing a book and really kind of leaning into my healing era. And so it's kind of brought me here, um, to where I really kind of have, I'm in this era of talking about body grief. And Yeah, that's like a really quick synopsis of where we are now.
Dr. Gretchen: I love it. I'm We first connected over on Instagram and one thing I love about Instagram is their stories because that's more like real life behind the scenes of what's happening versus just the feed that we can post on.
But what I love about everything that you post on your feed and in your stories. Is that you're real and raw and vulnerable and you're just sharing your day to day life and your day to day life at times is crazy, you know, so I've seen you in the hospital because you share that like pre and post surgery.
So it's, it's. Unique to be able to see something like that as it's happening.
Jayne: Yeah, it is wild. Yeah. One thing that I started, it's interesting because over the past five and a half years, like, I wouldn't share things. And then I would come back to work because work was kind of what was my life. Was my identity was my purpose.
I mean, it was everything and it's kind of that internalized able ISM that internalized capitalism, right? It's like, this is my worth. If I don't have that, then who am I? Because I was losing my mobility. I was losing my abilities. Um, I was losing my youth in a lot of ways. So it was like, if I don't didn't have that, then what do I have?
So I might as well pour it all into my work and my work was my business. And so I would go get lumbar punctures and I would go get. You know, these brain surgeries and then like, almost like right after they would drain my cerebral spinal fluid out of me, I would be answering emails and I would be, I would be like managing my pain meds around seeing clients.
Like, how, how does that make sense? How wild is that? But it, it did make sense to me because I would come up with the excuse of like, well, Who's going to run this business without, without me. And, you know, it makes sense to me, but it's really comes down to like, no, I was fighting for my worth because, you know, I, I, I needed something to fight for and, you know.
I wouldn't share this on social media because I was like ashamed of it and I didn't know what to do. And then all of a sudden, my friend, um, pointed this out that like every so often on social media, I'd be like, so yesterday I had brain surgery. And then anyways, look at this really cute shirt. And she was like, Jayne, you, that's vile, like, you can't do that, like, that is just like a weird trauma dump.
And like, people would be like, wait, what? And so I was like, yeah, you're right. That's weird. And I would just like, casually toss it in there. And so then I slowly started to like share more and more and more. And I realized people like actually were interested and cared and, and weren't scared of it as much as I thought they were.
Um, and the more I shared, the more people were like, wow, like I feel seen not in the way that they feel seen that they've had brain surgeries, but the way it may be some of them did, but the way that they feel seen like, Oh my gosh, I'm dealing with this grief on a different level.
Dr. Gretchen: Yeah. And I think that, Something you just said was you mentioned the trauma, the trauma dump.
And I think there's, there can be so much trauma around a diagnosis, whether it's getting a diagnosis or just navigating a disease in general. And even if it's not a disease, you know, navigating life, but. When it comes to a disease, in this case MS, or any autoimmune, neurological, neuromuscular disease, there's a lot of trauma and grief around that, especially in the beginning, but even at random moments as you continue living with the disease.
So can you share a bit about your thoughts on grief from a professional standpoint and a personal standpoint? Gosh, yes.
[00:11:09] Grief - Professional & personal
---
Jayne: Well, I think grief, unfortunately, Is one of those things that we just don't have like literacy on in our, in our culture and westernized culture. I know that's a big generalization, but I think it's a really accurate one.
when we're younger, when we're children and we see children being, if we're privileged enough. We see children being able to experience grief in a really safe manner, right? Where, like, they can have tantrums and they can, like, fall on the floor and just, like, feel their grief. And then at one point, does that stop?
At what point do we say, like, suck it up and get up and go to your room? And, or at what point do we say like, you know, if like a, a widowing or a, um, a widow and, um, someone in bereavement, do we say like, Oh, they need to go see a therapist. And in no way is a therapist a bad thing, but when they're grieving, you know, like, why do they have to go and do that in private?
You know, um, and yeah, that's okay. But also like as, as someone who's been trained to be a therapist, when it comes to grieving a spouse, like we, we can't do much as a therapist, you know, we're going to do the same thing and say like, let's sit with this, let's use some coping skills, but like, we're not going to fix the loss.
Right. So it's like, it's really about comfort for the other person. It's like, I don't feel comfortable with their grief. And, I think it's really about just loss and sadness and despair. And what I started to realize when I was working with clients with eating disorders and disordered eating, and looking back on my past, having an eating disorder, starting at the age of 10, going through puberty at the age of nine, looking and talking to.
Clients talking to family members, friends of all ages. I really started to realize that it was.
[00:13:14] Body Grief
---
Jayne: Body grief. And I started to name this, where they were grieving autonomy over their body. And I started to study this and it was this loss over their body that the more we started to name, this is body grief.
People were like, Oh my God, it was like this deep exhale. Like, holy shit. I've never had a name for this.
Dr. Gretchen: Yeah.
Jayne: And. You know, I was talking, I, I started to talk to more and more people about this and do research and they were like, Oh my gosh, I've never, I've never understood this, like this sadness and sorrow for my old self, for this internalized, you know, inner child for this, for this thing that I've been fighting for.
And I started to identify like these. Seven phases of the body grief and healing that rather than fixing it. Because I think that's what happens is when we think of grief or like, we just need to fix it and there's no fixing it.
Dr. Gretchen: Yeah, and I think putting a name to what you're feeling you're going through can be so powerful and honestly be that first step of, I don't know if acceptance is the right word, but understanding and it can feel like a weight lifted off your shoulders, even though you're still struggling with the same things, just having a name for it and knowing that
you're not alone and there are other people experiencing this and this is a real thing. It can just allow people to, I don't know, I think have a little bit more control over what might feel like the uncontrollable.
Jayne: Yes. Yes. Because when our bodies are doing things that we feel are really betraying us, right?
The one thing we want to do is. Kind of like give it a kick back, right? Like, um, and I call, I've coined this term or claim to this term, you know, perceived body betrayal, because in the end it's, our bodies are never betraying us as much as, as much as we feel like it is. It's just this perception it's, and I know that like.
It sucks so hard to hear that when like, everything isn't working, your legs aren't working, you know, your eyes aren't working, you're in so much pain, you're missing that event, you're missing that party, you're missing out on your kid's stuff. But your body actually in the end is always trying to keep you alive, it's just like the side effects and the symptoms of that really suck.
And sometimes it just gets it wrong.
[00:15:55] 7 Stages of Grief
---
Jayne: Right.
Dr. Gretchen: So what are the seven phases of grief? Cause that's something I've seen you talk about a bit.
Can you explain what that is and how it works?
Jayne: Yes. Great question. So one thing that's really important In regards to this frame work with body grief is that the seven phases of body grief are cyclical. So unfortunately, one thing I think that people want to see when it comes to a framework is like it ties up in a nice pretty bow.
Like there's like a band aid solution. That is not the case in this regard. Um, but I think one thing that is great is that it's more realistic. So I have worked through this framework. So much. I have so many storytellers in my book, from all walks of life. Um, multiple, multiple, multiple storytellers in case studies in my book, sharing their, stories of body grief, um, who have many different phases who have gone through all the phases.
And we'll talk about those seven different phases. And. It's cyclical, nonlinear, and you can be in many different phases at many different times. You can also have many different, grievances throughout your life. And so there's dismissal, shock, apology, fault, fight, hope, and hopelessness, and then body trust.
And again, many people will kind of go through those phases in that way, but some people might start At a different point. Does that make sense? Yeah, absolutely. And within those phases, it's really important to recognize your internalized systems of oppression. And a lot of people will talk to me and be like, why am I talking about privilege?
Why am I talking about systems of oppression when I'm talking about my body? And I think it's really important to remember that bodies are political. When we are living in a world that's Oppresses us. And so a quick example on that, and I really lay this out in my framework is, I'm sure a lot of people will, relate to this listening is, you know, disability isn't inherently wrong.
but if we were to go out in the world, the infrastructure doesn't allow us to live in a free way. Right. So if we can learn how to live in our house, that's really accessible and we can use, you know, Gretchen's PT and all of these things. But then we go out into the world, you know, systemically, that's gonna, put a lot of internalized ableism into our hearts.
and so that's going to then make our body grief that
Dr. Gretchen: much heavier. Does that make sense? That does make sense. And so, I mean, I just love the idea of the seven phases of grief, because again, if you have an idea of what phase you're in, it makes it more tangible. It doesn't feel, I imagine it wouldn't feel like, As much of a burden because you have a name for it, you know, Oh, okay.
I'm in phase three of, or stage three of grief. So I love being able to have a name for it. Are there different, this is the fixer in me talking.
[00:19:26] What can we do to feel better?
---
Dr. Gretchen: Are there different things that we can do to feel better with that grief based on what stage we're in? Yes. There's so many things. Okay. Is it different based on each stage?
Yes,
Jayne: absolutely. And so there's so many skills and tools. It's not just like we get to a phase and we're like, I'm here
because I think that would lead us to just be like, Why am I even doing this? Right, right. and yes, there are so many things that we can do. and that's where, you know, I think, That's why, like, in some regard, it can feel like, for some people, like, a trajectory into like, okay, I'm feeling a little bit more hopeful, right, um, which is why that's the sixth phase, hopelessness and hopeful, um, where, like, you're working through tangible experience and you're building these skills, and one of the concepts of body grief, um, or this is body grief, is We're building skills through these life experiences, but we're leaning into healing and burning out of maladaptive coping skills of our body grief.
Like we're burning out of some of the things that we would do. Like for instance, if I was, when I didn't have a name to my body grief, I was using my eating disorder, um, as ways to cope. A lot of people use alcohol or alcoholism or substance use. You know, some people use like anger and, and avoidance scrolling on their phone.
lot of people use avoidance. You know, I don't blame anyone for those maladaptive coping mechanisms because that is what they're doing to deal with their unnamed body grief.
Dr. Gretchen: So one thing that's coming to my mind right now is a specific example, but I have lots of people who have said similar things to me before, which is I was working with a man who has multiple sclerosis and we were talking of course about physical therapy and exercises and he was very open and vulnerable and shared with me that he doesn't really see the point in doing them because.
His body used to be able to go to the gym and do all these machines and lifting and X, Y, Z. And now he can't even do a fraction of that. So in his mind, his body can't do what he used to do. And therefore this new body can't even exercise at all. Even though he could move, he was still working. He was still relatively active, but nothing compared to what he used to be is that.
a form of body grief. I imagine some people listening to this conversation is they're hearing it and they're understanding it, but they might not be identifying with it. So I guess the bigger question is, how do we know if we're experiencing body grief and what, what does it entail?
Jayne: Yes. So that is absolutely body grief.
I think body grief is a universal concept and. That sounds like a lot of internalized ableism. It also sounds like, he might be in the fault phase. where it's like, some internalized ableism, some shame is there, like a lot of shame. One of the skills that I would use, or I would recommend to use would be the shift down perspective, which we talk about in the book.
Um, and this was, this would be in that. Phase, um, where it would be, this is one of the concepts that is where we build up in the book, um, where it's like you work on these concepts of connecting mind, body, spirit, coping strategies, shifting down where it's like, we are grieving the old you there.
We want to feel all the feelings, feelings are for feeling and. That all of that is very valid and we are going throughout these phases to work on grieving the old you and we are going to also nurture and honor with a compassionate way of taking care of the current you. And a lot of what we're building here is some perceived body betrayal where he is actively in this place of punishing his current body.
There is some perceived body betrayal here where he's saying, I can't believe. That my body, after all I've done for it, for years, decades even, I have taken care of it, I have worked out, I have, I have fed it right, I have loved, I have done everything, and look at what you've done to me, and I'm talking like in regards to him, look at what you've done to me, look at what this body has done to me.
Now it, and I'm going to cry because like, look at what you've done to me. It has just betrayed me and I'm not going to go work out now. What, what am I going to do it that for? Cause it's not going to perform the same way, but we owe it to our bodies to treat it kindly and with compassion because body trust is a two way street.
It's not going to trust us and treat us like it's not going to trust us if we don't trust it. And so we have to show up for it, bring it to the doctor's appointments, keep going back to the physical therapist. And here's the thing, exercise is not going to feel the same. Exercise is not going to look the same.
And, you know. Of course, we can hold hope that maybe one day, you know, you might get a little bit of that dopamine rush that you did when you were, you know, younger and, you know, throwing weights over your shoulder, but the shift down perspective is, is going to be like, what can you do that's going to give you that same, same feeling.
That same dopamine hit, that same hit, um, that same feeling of adrenaline that isn't that. And that in itself is going to be another grievance.
[00:26:02] Personal example - Dancing
---
Jayne: So let me give you an example. And this is what body grief is, is it's heavy and it's work and it's healing. So for instance, I was a dancer, That's like everything in me.
I just, I love dancing. It's everything for me. I then, in my eating disorder, I then found movement again in my recovery where I then ran events and I, Yoga studios and bar and spin studios, and I used to shout from the rooftops at these events saying don't work out for what your body looks like.
Work out for work out for what your body can do. And then I went blind, and I had my first brain surgery, and then I had more surgeries, and now I'm in a wheelchair, and there are days where I just literally can't even get out of bed. And now I think of that statement, and I think, F you, Jayne, oh my god, that was a really ableist thing to say, because What my body can do is barely anything and like now what right?
And so I look at that and I'm like, okay shift down perspective and for years I would just cry into a dark space and be like, I'm never gonna have joy and now with the body Greek work I've done I'm like, okay now I paint and I dance in my wheelchair, I take my rollator and I dance and shake my ass. and sometimes I cry and the shift down perspective is learning to do other things, but still taking care of my body and showing up.
And it is not, it's not going to be rainbows and unicorns. And that is the work of body grief.
[00:27:59] What are we working towardcs with the 7 stages of Grief?
---
Dr. Gretchen: So, when working with and through body grief and these seven stages of grief, what is the goal? Is the goal to Not have grief anymore, because I imagine that's unattainable. What is, what, what is the goal to feel better?
What are we working towards with this? The goal is to feel better. The goal
Jayne: is to be able to cope in a healthy way. The goal is to live alongside of your grief. the goal is to survive and live alongside of your grief rather than isolate and be alone and miserable. , I was recently talking to someone and she was like, why are you, you know, like, why are you, the way you are?
And my mom is the way she is. And I was like, she's like, my mom is like angry, sick. And you're happy sick. And I was like, that's so interesting. And I was like, well, it sounds like she's deeply in her body grief. And I was like, and that's so valid. And she was like, is everything body grief? And I was like, I think a lot of things are, I don't, I was like, so many people are in body grief.
Like, Like the majority of the world, like people who break an ankle, people who have an injury, people who are invalidated because of racial inequity in the workplace. Like so many people are in body grief, are experiencing it. And if we can do it in a way where we can learn how to cope in a healthy way, we will survive and be in a healthy place rather than coping in a really unhealthy way.
Um, we can heal. Rather than toxically live,
Dr. Gretchen: I'm hoping that as, as our listeners are listening to this episode, they're not only understanding more about grief and ways to work through it and work within it, but also that it might be eye opening. Because I imagine a lot of people don't have a name for what they're feeling.
And I think, you know, having that awareness first and foremost can then allow you more control and to look for more tools like what's in your book of how to work with this body grief. So can you tell us more? I know you've mentioned a little bit about your book and given us some inside tips of what we can find in there, but can you share more about what it's called?
Where can we get it? When is it available? All that good stuff.
Jayne: Yeah, it's called
[00:30:27] Book - This is Body Grief
---
Jayne: This is Body Grief, the publisher's Penguin Random House. It will be published March 18th, and pre orders are available now. you can access those through my site, and my newsletter is also available via Substack. and you can also, access that through my site at Jaynemaddingly.
com.
Dr. Gretchen: Awesome. And I'll put your site in the show notes as well. And one thing that I think is really cool, even though your book is for anyone and everyone with experiencing body grief, March is MS Awareness Month. So to have it release, to have it release in March, I think it is very fitting for anyone with MS who does feel like they're experiencing body grief.
And you also have A newsletter. Can you share more about that? Until your book is launched and released, is that something that we can go to, to hear more from you and learn more?
Jayne: Absolutely. Yes. So we have, um, I have a free newsletter monthly talking about all things body grief. And then we also have a subscription paid subscription, five bucks a month where you can join our community.
And we do like question and answer videos and an extra newsletter as well. Um, you join our community and we just like talk all things, body grief, and it's really great. So, I'm just loving every bit of it. And we're a growing community. And again, like everyone experiences body grief on some level, menopause, um, you know, having a baby, postpartum, and in the book we talk, there's so many examples, gender dysphoria, um, all the things.
Dr. Gretchen: Mm hmm. And can we find your newsletter on that same website or is it somewhere? Yeah, it's on Substack, but you
Jayne: can go to Jayne Mattingly. com and it's right there.
Dr. Gretchen: Okay, perfect. All right. Well, I'll share those links in the show notes for anyone interested in pre ordering and or just getting your newsletter and all the good things.
But thank you so much. I think this is such an important topic that is not talked about. Often as, as often as it needs to be. So I appreciate you sharing your expertise with us and, you know, opening our eyes to this phrase of body grief and some tools that we can use.
Jayne: Thank you so much for having me.
[00:32:50]
---
Jayne:
