Grieving Your Life Before PMDD with Sarah McCauley LMFT
Have you thought: "Is this grief? Am I going through grief right now?"
Have you wondered why your experiences don't quite match up with the 5 Stages of Grief model we've all heard about?
If you've got PMDD or any other chronic illness, chances are that, yea, you very well may have experienced grief as a result or are going through grief right now.
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Sarah McCauley LMFT is here to validate our feelings of grief and explain why they don't fit the 5 Stages of Grief model.
She also shares 3 Questions to Ask Yourself When Grieving What PMDD Has Taken.
And we discuss:Ambiguous grief, what it is, and how it relates to chronic illness.
How grief is messy and non-linear.
The 3 Questions we can ask ourselves as we move through grief.
What you can do to support yourself in your own grief journey.
Sarah McCauley is a Licensed Marriage and Family Therapist working in private practice in Lake Elmo, Minnesota, and has been in the mental health field since 2017. Sarah focuses primarily on working with individuals, couples, and families through significant life changes, stressors, traumas, and grief. She has been in a caregiving role personally and professionally, and worked alongside chronic and terminal illnesses. She has worked in a wide variety of settings to advocate for and collaborate with individuals navigating health concerns, both mental or physical. Outside of therapist life, she is a knitter, a mom, and an avid coffee mug collector.
Sarah is available to do virtual trainings about trauma informed medical care and collaborative care meetings, educational talks about chronic illness and grief, and is also available to work with Minnesota based clients for individual, couples, or family therapy.
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Title: Grieving Your Life Before PMDD with Sarah McCauley LMFT
Episode number: 15
Date: 02/09/24
URL: https://mindfulnessforpmdd.buzzsprout.com/2253562/episodes/14408737-grieving-your-life-before-pmdd-with-sarah-mccauley-lmft
Speakers: Diane DeJesus, RD, IBCLC (host) · Sarah McCauley, LMFT (guest)EXCERPT (00:00:00)
Sarah: Emotions inform us. They don't control us if we have the right tools.
INTRO (00:00:04)
Diane: If you want to learn how you can live better with PMDD, this podcast was created for you. This is Mindfulness for PMDD with Diane. I'm Diane and I'm a registered dietitian and lactation consultant. I'm also a mom, a PMDD warrior, and a trauma-informed mindfulness teacher. And this is where I discuss topics related to PMDD through the lens of mindfulness and meditation and where I share all about how mindfulness has gotten me to a place of greater peace and acceptance with my PMDD.
I also chat with people who have helped and inspired me along the way so they can share their wisdom with you too. So let's get started.
SAFETY NOTE / DISCLAIMER (00:00:55)
Diane: This podcast is not a substitute for psychological therapy or medical advice. Please take care when listening to this podcast, as some may find certain words or subjects triggering or difficult to hear. Take only what serves you and leave the rest behind.
WHEN PMDD GRIEF DOESN'T FIT THE FIVE STAGES (00:01:11)
Diane: So I don't know about you, but I have oftentimes wondered if some of the feelings that I was having as a result of PMDD were actually grief. And without fail, the next thing I would do is Google the five stages of grief, because I've heard of this five stages of grief concept for, you know, many years. And I never quite felt like I fit exactly the stages or the phases of grief. And so I've been wanting for a while to bring on someone that I could chat with about grief, who knew a lot about grief, who I could learn from.
And I found that person and I had a really great chat with this person. And here's what I learned. If you've got PMDD or any other chronic illness, chances are that, yeah, you very well may have experienced grief as a result or are going through grief right now.
Sarah McCauley is here to validate our feelings of grief and explain why they don't fit the five stages of grief model. She also shares with us three questions that we can ask ourselves when grieving a chronic illness. She talks about ambiguous grief, what it is, and how it relates to chronic illness. We talk about how grief is messy and nonlinear. And what you can do to support yourself in your own grief journey.
So Sarah McCauley is a licensed marriage and family therapist working in private practice in Lake Elmo, Minnesota, and has been in the mental health field since 2017. Sarah focuses primarily on working with individuals, couples, and families through significant life changes, stressors, traumas, and grief. She has been in a caregiving role, both personally and professionally, and worked alongside chronic and terminal illnesses. She's worked in a wide variety of settings to advocate for and collaborate with individuals navigating health concerns, both mental and physical.
Outside of therapist life, she's a knitter, a mom, and an avid coffee mug collector. So here is my chat with Sarah McCauley.
But first, I want to share a little bit about my program, Live Better with Mindfulness for PMDD. It's three months of mindfulness and acceptance coaching developed specifically for those of us living with PMDD. And you can do it and benefit from it really at any stage of your PMDD journey. Because with the tools you'll add to your toolbox, you can put the brakes on when you're freaking out or have something to help you get through life while waiting on a diagnosis.
You'll begin to invite more space between you and your thoughts and feelings so that you can identify less with your PMDD and reconnect more with your true self. And as you discover or rediscover your values, you'll find yourself able to say no to the things that really don't serve you and yes to the things that bring you closer to living the kind of life you want to live, because you can live a richer, more meaningful life with PMDD.
Now, if you're thinking, I've tried mindfulness before, or all that sounds nice, but I just don't feel like I have the capacity right now to sit and do long meditations or learn something new or add one more thing to my life, I hear you. I felt the same. I knew from how mindfulness helped me with PTSD that it could help me with PMDD. But I needed to find a new way to do it. So I created this program where everything's really short and simple. There are no hour-long sessions to sit through and you don't have to remember to practice mindfulness or try a mindfulness exercise because I'm there inviting you and prompting you throughout the week.
So if you're interested, here's your next step. Go to the show notes and click the link to book a chat with me. There's no cost involved and it's commitment-free and we get to chat PMDD and what's worked for you and what hasn't and what questions you have about the program. I would love to get to meet you.
All right, let's get back to the podcast.
Diane: Sarah, I am so excited that I get to chat with you today about grief in the context of chronic illness. So welcome.
Sarah: Thank you for having me.
Diane: Thank you. Can you tell us a little bit about yourself and what you do pertaining to grief and loss?
Sarah: Absolutely. So I'm a licensed marriage and family therapist, which means I work with individuals and couples and families at every stage of life. I predominantly work with adults. And a lot of the work that I do is focused around medical trauma, chronic illness, and the impact it has on the family system.
So this can mean long-term health conditions like diabetes or [sensory processing issues?], traumatic brain injuries, as well as I've walked alongside individuals who are terminal and their families. And being able to do that work is an incredible privilege. I've been working in the mental health field in a variety of systems since 2017.
Diane: Wow. That's awesome.
Sarah: No boring days.
Diane: So as you know, I recently got to hear a talk that you did on this topic. And one of the first things that jumped out at me was a concept that you explained about ambiguous grief. This was huge. I think this was the first time I really understood grief this way. So could you talk about that for our listeners?
AMBIGUOUS GRIEF AND THE LOSS YOU CAN'T ALWAYS EXPLAIN (00:07:08)
Sarah: Absolutely. Now I didn't start this work. There are many incredible academics who came before me. And we're, we're very lucky here in Minnesota where it's incredibly cold right now. I know you're in Austin. You're so much warmer.
Diane: We're cold, but yeah, I can't imagine. I can't imagine how cold it must be right now.
Sarah: So Pauline Boss back in the 1970s, she is a doctor of social work. She started this foray into the concept of ambiguous loss and ambiguous grief, predominantly around missing persons and families that had experienced divorce and, like, the loss of a role model. And that has just snowballed in the last 50 years into a much more complex understanding.
She actually just published this past year her most recent book about grief called The Myth of Closure. And unfortunately her husband passed away of a sudden heart attack while writing this book. But talking a lot about complex trauma, systemic trauma, the COVID-19 pandemic and the experience of not being able to witness the death transition, as well as other ambiguous losses, like the loss of an opportunity, the loss of a relationship, the loss of a potential.
Anytime we experience a transition internally, you know, a transition of how our body or our mental or emotional well-being might relate to something, or a relationship that we experience, or a hope that we might have, a role we fit in, that transition comes with loss. The transition where I know you've talked about with PMDD that changes opportunities, you know, let's say you have something you're looking forward to, but because of where it's going to fall into the timing, we might not be able to engage with that compared to other forms of grief work that focus very specifically on death transition. Right? The loss. Ambiguous loss, both resolved and unresolved, is a beautiful area of study.
Diane: Yeah.
Sarah: I highly recommend all of Pauline Boss's work. She is a little hero of mine.
Diane: And I mentioned to you, but just learning about that was so validating for me, because as you mentioned, it really can, ambiguous loss, ambiguous grief can be felt in so many different ways.
So, for example, for me, it was losing this sense of what I thought my life was or what my life looked like, which, yes, I know, we can't plan, like—
Sarah: Yes, expectation, yes. The idea of what am I running towards.
Diane: Yes.
Sarah: And those transitions, especially around specific developmental life stages. I hear a lot of families talk about this when a child is diagnosed with, like, a genetic illness. Of this changes how I thought I was going to parent.
Diane: Yeah.
Sarah: This changes how I thought our marriage was going to work. What kind of childhood this is.
Diane: I've even heard you say things like loss of routine, loss of, I mean, it can be—
Sarah: Predictability.
Diane: Yes.
Sarah: It is a privilege, and I could go on a whole rant about, but for individuals navigating chronic illness and the fluidity of symptoms, whether or not it's cyclical, that loss of routine. Like, I know I can start my day a certain way, or I know I can end my day a certain way.
You'll hear a lot in the chronic illness community about spoonies.
Diane: Yeah.
Sarah: We love our spoons. And for those listening who might not know, spoon theory talks about the finite capacity we have for a task. And depending on our own internal relationship, whether that's with depression or chronic illness, connective tissue issues, inflammation changes, how many spoons that takes away. Well, what do you do when you're out of spoons at 2 PM?
Diane: Right, and sometimes you're out of spoons at 2 PM and you're like, oh, okay, I can go with the flow with this. Other times, that's really hard to confront. And you might feel angry and resentful, you know, of your situation.
Sarah: Because grief is also horribly inconvenient. Life doesn't stop when you're grieving.
Diane: Exactly. Right. So I think you, you know, you've already said, like, grief is messy, and this next thing I'm going to chat about too is related to that.
WHY GRIEF DOESN'T MOVE IN A STRAIGHT LINE (00:12:00)
Diane: So I mentioned to you that when I first started thinking about grief in the context of PMDD, I one day was thinking to myself, well, this kind of feels like what they talk about when they say the five stages of grief.
Sarah: Yes.
Diane: But it felt like, is that what's happening here? I don't, I don't feel like I necessarily fit into these boxes or these stages. And so that made me feel like, well, maybe this isn't grief. So can you talk a little about that?
Sarah: Well, you're definitely not alone in that experience around the five stages. And so that's called the Kubler-Ross model. And it serves a purpose. It is a great encapsulation of the lived experience of someone who is actively dying.
Diane: Okay.
Sarah: It is not meant to conceptualize and understand the experience of walking with ambiguous loss or loving someone who is passing or what life looks like after someone passes. So there's been many theories — pardon me — and encapsulations of what grief can look like in a different model.
And I subscribe to John Zimmerman, or sorry, John Schneider and Susan Zimmerman have an incredible book called Transforming Loss. And they've developed this grief wheel, which takes all these different facets of life and your being — behavior, cognitive, spiritual, physical, relational — and how grief affects each of those components and more differently, and how we move through those things differently.
Like, we might get to a place with the physical impact of grief in a different way, in a different time than the spiritual or the cognitive. The cognitive piece of how do I conceptualize the loss that has occurred?
Diane: Yeah.
Sarah: How do I relate to that in a relationship with family and friends and loved ones?
Diane: Yes.
Sarah: How do I reconcile that with my spiritual beliefs? How does that play out in day-to-day life? All of those are going to look differently and it's nonlinear. It's going to ebb and flow. There are going to be days that are going to be better and days that are a lot harder, especially when there's new information of how grief impacts that facet of our life.
You know, in my own personal experience, I have experienced a lot of loss professionally and personally, about 21 deaths in 15 years.
Diane: Oh, wow.
Sarah: And I'm very grateful for all of those opportunities and in those spaces to learn my own grief and how different and compound they, they add on, both grief tied to death and otherwise. And one component of that was relationships that my children will never get to have with people in our lives where it's like, I wish I knew what they would say in this situation or I wish I could share this moment with them.
And how, you know, I'll go with another example of ambiguous loss in those cyclical stages. My grandparents were married for 65 years and when my grandmother passed at 89, my grandfather lived for about five more years, and she had been sick for a while. So that physical impact of caregiving was resolved. That question of what is lost, what is left, what is possible.
Diane: Okay.
Sarah: Oh, it's more possible for us to be more mobile. We have more opportunities because we're not tied to a physical location with caregiving.
Diane: Right.
Sarah: He was also the first family member to talk about going to therapy in his nineties, the World War II vet and an engineer. And he went with the intention of saying, I want to be able to talk about her without crying. So that cognitive emotional space of grief, he lost his best friend.
Diane: Yeah.
Sarah: He lost the person he had never spent a night away from.
Diane: Yeah.
Sarah: And that emotional space took longer to work through.
Diane: Yes. Yeah. So you're saying there's like, there's so many different levels of grief. There's so many different types of grief.
Sarah: And the ways that it touches our lives.
Diane: Yes. And we're working through all of those at—
Sarah: Different speeds.
Diane: Yeah. At different speeds. And—
Sarah: It's not always forward motion.
Diane: Right. It's coming and going.
Sarah: It's a process. There's ebb and flow. And especially with chronic illness and PMDD is a good example of unpredictable and cyclical.
Diane: Yeah.
Sarah: That your symptoms are going to change month to month. Interventions are going to take time to see whether or not they work. It unfortunately is something I am pretty familiar with with a lot of other reproductive health concerns, and you're not going to know what helps and what doesn't. Some months are going to be a lot worse than others. Some are going to be better. But it's that unknown.
Diane: Yeah, that's, you're totally right. Even, even when you're doing all the tracking and all the things.
Sarah: Oh, sure. You can have all the tools at your disposal and it's still going to suck.
Diane: Yeah.
Sarah: And that's grief.
Diane: Yeah. It's funny. I tell people sometimes, you know, overall, I know what my symptoms are, but from month to month, a different selection of symptoms may show up and there's no way of predicting that. And that's part of that frustration.
You know, like you mentioned that grief is inconvenient and frustrating and impractical. There's just, there's no way to, I mean, I think it's the control thing, right? We think we want to be able to, to know what's coming.
Sarah: You think you're still in control?
Diane: We want, we want to know what's coming. We, we trick ourselves into thinking we pretty much know with all the tracking and everything. And then a new cycle comes along.
Sarah: And the world doesn't make space for this as easily, you know.
Diane: Oh, heck no.
Sarah: That idea of if you ignore the check engine light, it's not going to go away. The car will break down. The car being ourselves. And that our spiritual, emotional, and mental health is as important as our physical well-being.
I don't know if you're familiar with the theoretical model of the biopsychosocial spiritual lens.
Diane: Yes.
Sarah: I love it. It's a mouthful. But this idea of, you know, our bodies and our cognitive well-being and our emotional well-being and our environmental well-being all are interacting and in conversation with each other all the time. All of these data points are necessary and important and inform us. Emotions inform us. They don't control us if we have the right tools.
Diane: Yes. Yes.
WHAT IS LOST, WHAT IS LEFT, AND WHAT IS POSSIBLE (00:19:37)
Diane: Okay. I feel like that's a good segue to my next question because you were saying our emotions can inform us. And one of the other things that I learned from you that I think maybe perhaps came from the, the model of grief that you were just talking about is this idea of, like, these three questions that we ask ourselves as we move through grief.
Sarah: Yes. So that comes from the grief wheel.
Diane: Okay.
Sarah: That we start with the question of what is lost, and that's often the easiest one to answer in some aspects. It can be harder with, you know, the spiritual, the relational. That's where the ambiguous loss can often come up, that future-forward thinking. But asking ourselves, what is the thing that I am grieving, and what remains? What is left? How do I hold space for those two things? Because sometimes what remains is as painful as what was lost.
Diane: Ooh.
Sarah: Well, in line with funerals are for the living, it's harder to do the work after the trauma at times. To heal is hard work. To navigate the wreckage is hard work.
Diane: Yes.
Sarah: To continue existing is an incredibly brave thing.
Diane: Hmm. Oh, thank you for saying that. Oh, that gave me chills.
Sarah: And that idea of what is possible, of not just being left assessing what remains, but also then to find hope and acknowledge what we can be capable of being. And that idea of transformation. I often talk about grief as an open wound or a wound in the process of healing.
Think about when you get a big scrape and you bump it the wrong way, it'll reopen and it'll be painful and very jarring at first. And as you go through healing, you know, it might not get bumped open as easily. It'll still hurt. The scars never go away. The scar tissue, the nerve damage remains and often pops up in unexpected ways.
Diane: Oh boy. Yeah.
Sarah: That's the ambiguous loss and that's the, the transformation. We learn to exist with our scars. We are forever changed by our scars.
Diane: We learn to exist with our scars. I love that.
What I love about these questions is that it reminds me a lot about what we do in mindfulness and acceptance and commitment training because the first step is sort of making space to just see what's there and that's—
Sarah: Acknowledgement.
Diane: Right. That's sort of like the, what is lost, right? What's just happened?
Sarah: There's further details in the, in the wheel that talks about awareness and coping skills as that very first step of, you know, getting your bearings.
Diane: Yes. And I don't know, maybe you have insight on this, but does that happen when we're in that really, really early part where it's like survival mode and maybe we don't even have a diagnosis yet? Or is that like, you know, what's going on and like the dust is settling. Yeah. Help me with this.
Sarah: Once again, I get to nerd out. Another academic hero of mine, John Rolland, Dr. John Rolland, he talks so much about chronic illness and families from a systemic lens. And he's broken chronic health into sort of three stages of the pre-diagnosis crisis, and then that transition from crisis to the chronic long haul.
Diane: Okay.
Sarah: And for individuals who might have a significant change or terminality, then that pre-terminal and terminal stages.
Diane: Okay.
Sarah: And those catalyst points of when there is a significant change, new information, symptoms differ, the goals of that are different.
Diane: Ooh, okay.
Sarah: So in that pre-diagnosis stage, I'm even hesitant to use this word because it's so heavily misunderstood. Gaslighting happens.
Diane: Okay. Yep.
Sarah: That, am I actually experiencing these symptoms or am I crazy?
Diane: Mm-hmm.
Sarah: And now we don't use the C-word in this office. Crazy's not a diagnosis. Crazy's not a thing. But that lack of clarity of can I even trust my body? Can I understand what is happening?
Diane: Right.
Sarah: Why is nothing making sense? And it's the WebMD effect. You Google your symptoms and it's the worst possible situations, or it's nothing.
Diane: Right. Always.
Sarah: Which is very accurate. And sometimes it can take people decades or the end of their life to finally get a diagnosis. And that healing that can happen of, oh, now so much of my life makes sense when understood through this box.
Diane: Right.
Sarah: Diagnostic box.
Diane: Right.
Sarah: And with that box, we can make a game plan to manage, to have a treatment plan that doesn't make it go away. It's not always curable, but there's a difference between curable and healing.
Diane: Yes.
Sarah: The goal is to not get better. It's to manage.
Diane: Yes.
Sarah: That's the correlate with grief. Sometimes when you're grieving, the goal is to just be vertical. It's not to be thriving.
Diane: Yes, absolutely. Yeah. And to your point, you know, correct me if I'm wrong, but to your point about the process being messy and not linear. Sometimes the goal is to be vertical, not thriving. Then the goal is to be thriving. You're like, I'm feeling great. Let's go for it. And then sometimes you're back to just trying to be vertical again.
Sarah: Because you're going to bounce back and forth multiple times because your body changes over time.
Diane: Yeah.
Sarah: Things change over time.
Diane: Yes. And so, and this, again, this is why I love these questions so much.
Sarah: Because that question of what is lost and what is possible and what is left. We just bounce all over the place.
Diane: Yeah.
Sarah: What is possible with chronic illness? It's a lot more than a lot of people think.
Diane: Yes. Can you talk about that?
Sarah: Ableism. Can I? It's, you know, living with chronic illness is not something to be pitied, nor is it something to be like inspiration porn idealizing of like, oh, you're so brave. I am just here.
Diane: Yeah.
Sarah: You know, we want to have good supports. We want to accommodate. Everyone benefits from accessibility. One of my favorite fun facts to do on, like, family vacations is point out all the accessibility engineering marvels because everyone benefits from them.
Diane: Yeah. It's true.
Sarah: Like the two dings of an elevator indicate going down, one ding going up. It's unobtrusive, it's helpful, and it grows opportunity for individuals who need it. Because we're not going to be whole and not in need of accessibility at any point in our life.
Diane: Right.
Sarah: I'm so glad I didn't grow up in the 1500s because I would have fallen off a cliff a long time ago with how bad my vision is. Yay, mobility device.
Diane: And for me, I would love to hear if you see this, like, in your clients, maybe. So for me, probably the biggest thing has been learning how to move past my obsession with what is lost and get to the what is left and what is possible and, like, focus more on the what is possible, because for me, that's where, yeah, yeah, it takes time, but for me it was just such a revelation that, like, I was fighting for so long.
I was so resistant to allowing the PMDD in, and I was very much trying to, I was like poring over all of the lists of the self-management tools and the treatment options, always trying to do the next one and the next one and the next one.
Sarah: If I do everything right, I'll be fine.
Diane: Yeah. Yeah. I was like, I just have to do all the right things. Be a good girl, tick off the list.
Sarah: And that also speaks to, you know, the systemic wound of how we talk about women's reproductive health.
Diane: Of course. Of course. Yes.
Sarah: So PMDD is a relatively controversial diagnosis.
Diane: Yes, it is. Yeah.
Sarah: And we live in a time with a much better understanding of the endocrine system and its impact on neurotransmitter and hormone health and whole body health. It's not just bad PMS.
Diane: Yeah. Like, in many ways, I'm so glad you're alive.
Sarah: Yeah. With PMDD. Yeah. Oh, yes. Because it is terrifying. It's similar to brief psychotic episodes at times.
Diane: Yes.
Sarah: And yeah, for that reason, I myself, I don't use that kind of expression, like, you know, extreme PMDD or severe — or sorry, severe PMS.
Diane: And if I do here, I try to kind of always kind of explain what you just said, because yeah, it's a whole, it's a whole different thing.
Sarah: And to hold space for that, what is left of what is possible of those, those months where the symptoms aren't that bad.
Diane: Yeah.
Sarah: Or are more managed than they used to be. And the opportunities that you're given and the grief of the months that you didn't have.
Diane: Yes.
Sarah: Because you're rediscovering what has been lost by discovering what is possible.
Diane: Yes. Absolutely. And, oh gosh, you know, part of it too is, like, my perception of what was lost, I think was changed a little bit once I could see what was possible.
Sarah: Absolutely.
Diane: And what I mean by that is, like, I felt like I lost myself. I felt like I lost my life as I knew it. And the things that I loved about my life and even, you know, because it affects everything, it affected my relationship to my partner, to my child, you know, and—
Sarah: And to yourself.
Diane: And to myself.
Sarah: How you perceive yourself.
Diane: Yes. Yes. And so I thought everything was just like, my whole life was just like melting, disappearing in front of me. And being able to get to that, what is possible for me, that was like through a lot of values work and realizing that I still can honor the things that are most important to me. Maybe it'll look a little bit different now, but I actually still can.
Sarah: It's not the parts that are touched by grief, because everything's touched by grief. But if we still have access to it, the way we're able to live it out is different, but the core value remains the same.
Diane: Yes. Yes. And that was so huge because once I could connect to that, it was like, oh, okay, I think I'm going to be okay.
Sarah: It's like a fog lifts and you're like, oh, oh, oh, there I am. I missed you.
Diane: Yes. It was like suddenly I felt I could see more clearly.
Sarah: And those moments that feel familiar when they haven't been present for a long time.
Diane: Yeah.
Sarah: That's that ambiguous loss popping up.
Diane: Yes.
Sarah: I lost what my life was that I didn't realize it wasn't.
Diane: Yes. That's that thing that you can't quite pinpoint.
Sarah: It's the intangible.
Diane: Yeah.
Sarah: And the nebulous.
Diane: Yes. Yes. Okay. This just reminded me that you, and I don't know, it's up to you.
Sarah: I told you I've talked for hours on this.
Diane: No, no, this is so good because we were talking about, like, loss of self and perception of self. And you had some beautiful things to say about identity. So I, you know, and it's up to you if you have, if you feel like you have more that you want to say, but I invite you to please, if you want to talk more about grief and identity, to go for it.
LEARNING TO LOVE YOURSELF WITH YOUR LIMITATIONS (00:33:06)
Sarah: Of course. Well, part of it is also, you know, understanding who we were before loss and that loss of innocence. It's very fascinating to me as a therapist to talk to people about how old they were when they went to their first funeral. There are certain cultures and families that really value bringing children in young to understand the life cycle and process grief. And it's developmentally typical to start asking questions about death between age four and six. Just so young.
Diane: Yeah. Yeah. My son's six. He, he already has been asking questions.
Sarah: Oh yeah. My, my kids have been to multiple funerals and that idea of uncomfortable questions that kids ask about death. So fun. Especially at seven in the morning.
But I will encounter adults who are in their mid-20s, 30s, who have never been to a funeral. And that idea of, I don't know what to do with this loss of innocence, that idea of who I was before. And in any transition, any big life event, death or otherwise, pre-diagnosis, pre-symptoms, pre-anything with PMDD, of life before menses. Can we even remember back that far?
But that question of who I was before and that desire to protect and hold safe that very innocent being.
Diane: Yeah.
Sarah: And grief that we don't get that privilege.
Diane: Yes.
Sarah: The grappling with the truth.
Diane: Right.
Sarah: It's uncomfortable.
Diane: It's uncomfortable.
Sarah: And part, part of the joy of the work I get to do — are you familiar with the term dialectical thinking?
Diane: Oh, I'm not sure.
Sarah: Okay. So dialectical thinking is sometimes referred to as paradoxical thinking. This idea of holding two conflicting truths simultaneously.
Diane: Yeah.
Sarah: And man, it's a workout.
Diane: Yeah.
Sarah: That gift of knowing that I can, I can love myself and, sitting in that and, I can love myself and dislike my symptoms. I can grieve who I was and accept who I am. And this is why every therapist you'll meet's favorite movie is Inside Out.
Diane: Oh, Inside Out, the animated film?
Sarah: Yes, that had an internal family systems therapist involved in the writing and development.
Diane: Oh wow.
Sarah: It does an incredible job encapsulating this idea of I can have a fond memory and sadness.
Diane: Yes. Yeah.
Sarah: And in chronic illness, maybe it's, oh, I had this incredible moment, but it's at a time where my symptoms weren't managed or because I didn't know what was affecting me at that time.
Diane: Or, you know, having, you know, I'm going to try to live my life along my values and I try to do the things I want to do. But also, I have to have compassion for myself when I have to kind of bend and flex and do things a bit differently.
Sarah: I am imperfect and capable.
Diane: Yeah. All at once.
Sarah: Yes.
Diane: Yeah.
Sarah: It's so freeing to love ourselves with our limitations.
Diane: Yes. Oh my gosh. I am imperfect and capable. I mean, that's the whole thing. Say it again, you said, it's so freeing to love ourselves—
Sarah: With our limitations.
Diane: With our limitations. That's the whole thing. I think that's the whole, I think that just perfectly encapsulates for me anyway, the whole challenge that was before me when I was fighting, fighting, fighting.
Sarah: Yeah. It's that space between surviving and thriving because it doesn't always look like thriving. Sometimes it's just existing. And the idea of contentment, it's fleeting. It's a very ableist perspective. I'm laughing because I'm, yes, I'm reliving. I'm reliving so many moments right now. To expect, like, long-term stability and long-term, like, happiness is the goal. You gotta be happy all the time. You gotta be positive all the time. No. No one is.
Diane: Yeah.
Sarah: We fluctuate. Life changes day to day. Some days it's a good grief day, some days it's a bad grief day. Every year, beginning of February, sneaks up on me. Three quarters of the deaths happened in February. Shortest month. Screws me up every time. And it's body memories that often pop up first. Like, oh, why am I just off? You know, I have the brain fog. I, you know, my temper's short.
Diane: Yeah.
Sarah: I just, I feel blurry.
Diane: Yeah.
Sarah: Wait, what day is it? It's February. Thanks, body keeping the score.
Diane: Wow. Yeah.
Sarah: Because even if we're not conscious, it's still affecting us on an unconscious level.
Diane: Yeah. I have, I'll say two things. I have a similar thing with basically as the fall comes along. Like, for me, so many traumatic things that happened in my life—
Sarah: Transition of seasons.
Diane: Yeah. And everything that happened happened in like October, November, December, you know, and so I don't notice. My body notices first as the season changes to autumn. I'm just feeling like irritable. I just, grumpy, my outlook is not—
Sarah: Yeah, to accommodate you exist with your limitations.
Diane: And then I realize, oh, I see what's happening here.
That is a very similar thing that would happen to me from cycle to cycle in PMDD. Absolutely. I'd be going along thinking that everything's cool. This is a good day, you know, let's say 3:00 PM rolls around. I know my luteal phase is coming up or I'm in my luteal phase, but things are going good. So I'm good. I'm fine. Right. And then maybe 3 PM comes around and suddenly, again, my body's feeling at first. I feel like my heart feels like it's pounding a bit faster. I'm feeling a bit, like, snappy, irritable. And it takes a little bit before I realize, oh, I see what's happening here.
Sarah: And especially in chronic illness, this duality, this paradoxical nature of, I can't trust my body, but I have to trust my body.
Diane: Yeah. I have to listen to those clues. I have to acknowledge those clues and take them on and act accordingly. But also I'm always feeling like it's throwing curveballs at me and, you know, just trying to give me a hell of a time.
And that, I don't know, that in itself is part of that ambiguous grief, right? Yeah. That frustration of, like, never knowing. Yeah. A loss of predictability, a loss of boring. I miss boring.
Yeah. Yeah. Okay, Sarah. Yes. I don't know if this is okay with you, but you said some really beautiful words about identity in a previous talk of yours. So we can edit it out if you like, but I wonder if you would be okay with me reading you to yourself.
Sarah: Oh, sure.
Diane: Reading you to you.
Sarah: Oh, sure. I wish my past self had some real nuggets of wisdom.
Diane: It truly is just so beautiful. And I want the listener to hear this.
Sarah: Awesome. Let's dive in.
Diane: All right. So I'm going to remind you of what you said.
Sarah: Great.
Diane: This is about grief and identity. So you said: there are inherent components of your identity, of your personality, of your sense of self, that are not affected by the fact that this diagnosis exists. Your humor, your smile, your ability to love. Your life has been transformed by this diagnosis, but you as a person have not. You are you.
And I heard that and just, I mean, first I was just kind of stunned and speechless, but I was like, yeah, yeah, that's it. But it takes a long time to get to that.
Sarah: That's that piece of what is left. Of who am I and am I still me?
Diane: Yeah.
Sarah: Am I the parts of me that I want to be, that I can be?
Diane: Hmm. Yeah.
Sarah: I'm so glad that resonated with you.
Diane: Oh, that one like just hit me like a ton of bricks in the best, the best of ways. Because I think that what my grief came down to was fear that that wasn't true. Like fear that I'd lost myself.
Sarah: And certain diagnoses are harder to get to that place than others. So, if I'm remembering correctly, that talk, that was specifically about, like, organ dysfunction.
Diane: Yeah.
Sarah: And with something like PMDD, that is a multi-system impact in an endocrine disorder, that it's harder to see through the mess of the symptoms to see the part that hasn't changed. And it's not to diminish the other diagnoses and the other things, because every significant chronic medical condition affects every part of our life. Some just have different limitations.
Diane: Right. Yeah. And it is just like you said, it's just, it's messy and you kind of got to, like, sort through and untangle that mess first, for lack of a better way of putting it.
Sarah: Oh, it's absolutely. A few people have sent me, there's a, I think it was a New York Times comic of what therapy feels like and it's a tangled ball of yarn and I'm just widening the yarn.
Diane: Yeah.
Sarah: We can separate out the thoughts. We got it. I spend the whole hour on unpicking the knot.
Diane: Yeah. Or like sometimes I would feel like, like I was walking through this really kind of tangled, overgrown jungle, you know, like, it's like my machete, like trying to hack my way through.
Sarah: You can't see the forest for the trees.
Diane: You can't. Yeah.
Sarah: And it's also part of having a really effective care team in our grief and in our long haul, who's curious and compassionate and competent.
Diane: Yeah.
Sarah: See you as more than your diagnosis, be willing to explore alternative lines of thinking, think about things in a different angle, and know what they're talking about.
Diane: Yeah.
Sarah: Especially with PMDD. I'm sure you've encountered a lot of providers who didn't know how to walk with you.
Diane: Yes, and heard lots and lots of stories from many, many people with PMDD who just felt completely either unheard and unseen, or like they almost showed up with more information than—
Sarah: Oh.
Diane: Yeah. A provider could give them.
Sarah: Oh, yeah.
Diane: Yeah.
Sarah: And then still walk out feeling like they got talked down to.
Diane: Oh, absolutely. Okay. Speaking of ambiguous, perhaps this question is a bit ambiguous, but I am mindful of the time. And I do want to ask you, for our listeners who either have PMDD or perhaps think they may have PMDD and are sort of in that post-initial phase we were talking about before, you know, figuring, figuring things out, but either way, feel like perhaps they are going through a grief process. Is there anything you want to share? I mean, just any last words of wisdom or resources or advice that you'd like to share?
SELF-TRUST, ADVOCACY, AND THE CARE TEAM YOU DESERVE (00:46:21)
Sarah: Build a good care team. You are the expert on the lived experience of your body. We do not have the current medical tools to jump inside your body and figure out what you're experiencing. So your data points are critical in your own advocacy.
It is hard. It is hard and you are capable.
Diane: Yes. It is hard and you are capable. And yeah, we all, everyone's PMDD experience is so unique.
Sarah: Absolutely.
Diane: And in fact, not just from person to person, but within an individual from cycle to cycle, from moment to moment. So, you know, you mentioned kind of, you know, knowing yourself, take that with you. Your experiences are your data.
Sarah: Yeah. And I can speak to, you know, my own experience with chronic illness. So I've been navigating some of my own that went for a while without being diagnosed, and it took me bringing 10 years of data to a different medical professional and saying, look at the standard deviation. This is not, this is not normal. And I was right.
Diane: Yeah.
Sarah: And it took the right test, the third try of the right test, at the right time, of curiosity. It took over a year of consistent advocacy with 10 years of data. It's a reproductive health concern, and that vindication and grief of, I knew something was not right. And I don't like that I was right.
Diane: Yes. There, there it goes. Holding those two things again.
Sarah: Yeah.
Diane: Vindication and grief. And I've been there so many times in my life, like not even talking about PMDD, where you've got to do the work and advocate for yourself and keep looking for that provider that will hear you and see what's happening. But, and I think, obviously, this is a little bit outside of our topic, but how, even myself having—
Sarah: Conversation.
Diane: How do you maintain that trust in yourself and keep going and stick with it? Like, I know I've been there. I've done it and I still don't have that answer. Sarah.
Sarah: It's okay if you don't trust yourself a hundred percent of the time, that moments of doubt and feeling disheartened and feeling overwhelmed at the burden of the emotional labor that is managing a chronic illness is perfectly reasonable. And I cannot tell you the number of times I have that conversation every week with clients of I'm just so tired. I want someone else to make the decision for me. I just want it to be easy.
Diane: Yeah.
Sarah: And in those moments, having things outside of just our medical journey can be really important. The little wins of self-care, of the things that remind you of your capability.
Diane: Yeah.
Sarah: Everyone needs hobbies. Hobbies are so important for that space of, I know that nothing else might be going well right now, but I'm gonna make the best darn chocolate tart that you've ever had. Or I'm gonna create this really amazing quilted square. Or just draw and make watercolors. The opportunity to create, to be, to exert power and control in a predictable pattern.
Diane: Yeah.
Sarah: We need those reminders of low-risk, high-reward capability.
Diane: I like that.
Sarah: It's a different type of way of looking at self-care. It's not all bubble baths.
Diane: No.
Sarah: I mean, don't get me wrong. But sometimes our best self-care is not just what are we saying yes to, but what are we saying no to. And maybe that no is putting our medical binder, because it's a binder, away to give ourselves space to check out and permission.
Diane: Yeah.
Sarah: To not have to do that full time.
Diane: Yes. And maybe even when we can do that, perhaps that can even help us see some of that, like, what is left, what is left, what is possible. What are the things that matter most to me?
Sarah: And sometimes you've got to fight tooth and nail to find those spaces.
Diane: Yeah.
Sarah: But they're there.
Diane: I will share that I saw that you are a knitter. Is that correct?
Sarah: I am.
Diane: And I, at the beginning of my PMDD journey, took up knitting. And I'm a knitter.
Sarah: I love it.
Diane: Yes. That's my, like, it's such a great, when I just need to stop.
Sarah: Productive self-care. Neurobiologically, it helps us reground ourself with consistent left, right movement across hemispheres. So look at you.
Diane: Yes. That's my favorite.
Sarah: What are your favorite things to make?
Diane: Oh, baby hats.
Sarah: Yes.
Diane: Just adorable little baby hats.
Sarah: I love it.
Diane: And I think I've made about, like, three stuffed animals. I made those for my son. They're the hardest, but they're so rewarding when I'm done. And the fact that he then is carrying around this thing and it's like, oh, you made it for me, you know.
Sarah: Yes.
Diane: Just fills me up with love.
Sarah: Especially on days that, like, our symptoms might flare up of, I can't lay in bed with you, but here's this thing. Every stitch was made with love. It's here with you when I can't be.
Diane: It's something that helps me to feel productive, helps me to feel like I can share a piece of myself with someone else, show them that I care, you know, if I make something for someone. Yes. And I can just sit on the sofa and do it in the peace and quiet and not need to expend much energy at all. And it's soothing. I love it.
Sarah: Low-risk, high-reward.
Diane: Yes. I have to ask you about the sweater you're wearing now. Did you knit it?
Sarah: Yes.
Diane: Oh my God. Okay. So while we are recording video, I don't always use the video, so I just have to say, she's got the most beautiful sweater on. Can you describe the sweater?
Sarah: Sure. So this is from the year of sweaters, where I made, I think, 47 knit objects. I didn't sleep much that year. So it's a green and cream colorwork and textured short sleeve sweater. And I want to shout out to Farmer's Daughter Fibers in Wyoming. They're Indigenous-owned and part of their profits go towards helping Indigenous women in recovery. And they did this beautiful cream speckled green yarn and the pattern is Knitty McPearly. She is a cancer survivor and makes amazing patterns.
Diane: Oh, I love this so much. Sarah, I have had so much fun chatting with you. I, oh my gosh. I have been wanting to get into this topic for a long time because it was a big one for me personally, but I was just dying to find the right person to do it with as a conversation. And I'm so thrilled that I found your talk and that you were willing and able to come on. So thank you so much for being here.
Sarah: My pleasure. And you know, if there needs to be a part two, if people have questions they need to be expanded on, know that I am here. I am happy to talk about this for many, many, many hours.
Diane: I would love that. In the meanwhile, if people want to connect with you, find you online, what have you, work with you, how can people find you?
Sarah: So I don't, I don't necessarily have a big internet presence.
Diane: But anything you'd like to share.
Sarah: So I am available to do talks and trainings about trauma-informed medical care and collaborative care team models and grief. I'm also, I am working predominantly just with clients in the state of Minnesota. I'm only licensed in Minnesota and you can find me at Next Chapter Family Counseling. That's the name of my company. It's ncfcmn.com.
Diane: And you did give me some links and some information that I will be sharing in the show notes as well.
Sarah: Excellent. Oh, Diane, this is great.
Diane: Thank you so much. This was wonderful. I love chatting with you.
Sarah: Fantastic. It was wonderful.
Diane: Thank you, Sarah.
Sarah: All right.
OUTRO (00:56:00)
Diane: Thank you so much for listening. If you liked the show, please subscribe wherever you get your podcasts. For links to everything mentioned in this episode, you can check out the show notes and you can find me, Diane DeJesus, on Instagram @mindfulnessforpmdd. Now I invite you to pause, take a breath, and look around.
