Femammal
Femammal
Neurodivergence, Mental Health, and PMDD
Today's guest is Jessie. Jessie's pronouns are she and they; Jessie is a public librarian from KY who identifies as neurodivergent and as having a disability. In this interview, we dive into the ways in which Jessie's experience of neurodivergence and disability are also impacted by gender and hormones, creating a Venn diagram of overlapping challenges and symptoms. Jessie reflects on childhood memories and professional adult experiences to understand the ways in which our society is not set up to embrace the diversity of experiences like hers. Finally, they share how they are advocating to meet their needs and the path they are taking to get the medical interventions and professional accommodations they need to flourish.
Jessie would like to share these resources:
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[00:17] Greer:
Hi, this is Greer, your host for Femammal, the podcast that holds space for women to explore what it means to live well in our bodies and celebrates moving through this world as female mammals. Today's guest is Jessie. Jessie's pronouns are she and they. Jesse is a public librarian from Kentucky who identifies as neurodivergent and as having a disability. In this interview, we dive into the ways in which Jessie's experience of neurodivergence and disability are also impacted by gender and hormones, creating a Venn diagram of overlapping challenges and symptoms. Jessie reflects on childhood memories and professional adult experiences to understand the ways in which our society is not set up to embrace the diversity of experiences like hers. Finally, they share how they are advocating to meet their needs and the path they are taking to get the medical interventions and professional accommodations they need to flourish. Welcome, Jessie. You are a podcast listener who offered to share your story with us today. So I really appreciate that. And one thing that you shared with me is that you are a person who identifies as neurodivergent. Could you start by explaining what neurodivergence is and how you came to that self-understanding?
[01:55] Jessie:
Yeah. So neurodivergence is the not neurotypical way of experiencing and processing and understanding the world. So a lot of disorders fall into it like autism, bipolar disorder, the one where you can't read words in the right order, dyslexia, dyspraxia--that's the one where you don't understand numbers in the same way that other people do--ADHD, those all fall under the umbrella of neurodivergence. So then a neurotypical person doesn't have those ways of understanding and experiencing the world. Another part of that, which I'm sure would be the next question, is that I also identify as a person with a disability. I have major depressive disorder and generalized anxiety disorder. Major depressive disorder does fall within the government definition of a disability. And so that to me, while it's not diagnosed as bipolar disorder, I also identify as autistic. But I don't have an official diagnosis, which we can get into later. So I kind of feel like in the Venn diagram of me--I'm quite obsessed with Venn diagrams--identifying as a person with a disability umbrellas all of the areas in which I struggle to exist in capitalism. So while autism, ADHD, these types of disorders can be disabling in capitalism, they aren't necessarily disabilities as just in life. If conditions were better, the ways that I present my neurodivergence would not be disabling. So it's kind of hard to explain in that way, but that's kind of why I say the way that I experience the world is disabling and the ways that it presents, I struggle with getting accurate diagnoses from medical professionals. So we'll say it like that.
[04:22] Greer:
Yeah, that's really helpful. And I appreciate that distinction you made because our education systems and our professional expectations and our healthcare systems and all these things have been set up for people who are neurotypical and have to be adapted or rethought to be useful for people who are neurodivergent. And I think maybe we as a society are maybe just beginning to think about that.
[04:54] Jessie:
Yeah. And the interesting thing about autism too, is that the way that we, popular culture, generally understand autism is as like a little boy's disorder. And this is where I haven't done a ton of research, but Dr. Asperger, which is what we used to call autism spectrum disorder, Asperger's syndrome, or Asperger's disorder named after a Nazi doctor who studied on Aryan boys to try to figure out how to make people not autistic. And so all of the understanding of what autism is was from Nazi studies on Aryan boys. And so people who don't fit under this Aryan boy identity don't necessarily have the same presentations as what we typically understand of as autism. Autism in women or in AFAB people has a different presentation because AFAB people, who are assigned female at birth, grow up with these gendered socialization where your special interests might not be in trains or whatever or cars like boys. But your special interest might be in horses or in Elizabethan literature or in fashion or in things that we typically associate with normal female behaviors and interests. But where the difference lies is in that understanding and experiencing of the world. So you might look at a girl who is really into horses, like a young kid who's really into horses or whatever, and just be like, oh, girls love horses, or whatever. But this girl is out here reading the Encyclopedia of Horses. She wants to know the anatomy. She wants to know about the hair. She wants to know about what they eat. She wants to know every single thing about horses, whereas a boy might have those same traits about something different, like a train, which is what we typically think of. The other thing about AFABs being socialized as female is that you are socialized to fit in and not be different and to be a people pleaser and to not be disruptive. And while you may be experiencing a lot of sensory distress in your body and mind, you look to other girls who are neurotypical or who are successful in the ways that you think you should be successful. And you mask your natural behaviors to mirror other girls so that you appear normal, so that you can fit in. So that is difficulty in diagnosing autism and AFABs is that my natural presentations, I intentionally don't do them because I want to fit in with other girls. And so if I were to behave the way that I would naturally behave, maybe it would be more obvious that I'm autistic. But because I'm socialized and I'm trying to succeed in a world where certain traits are valued and rewarded over other traits, I intentionally mimic other people to be more normal, to be more successful. Get what I'm saying?
[08:45] Greer:
Yeah, all that kind of theoretical framework is really helpful. And also, AFAB is a new acronym for me, and I really enjoy it. Thanks for spelling it out.
[08:57] Jessie:
Yeah. And this is another thing that is part of my identity, too, is I am AFAB. I was assigned female at birth. I am also cisgendered woman. However, this is another conversation, which I'm happy to have, too. But what does it even mean to be a woman? Right. I'm glad we're having this conversation generally writ large in society as we talk about transgender women or gender nonconforming people. Do I personally identify as a woman all the time? No. Because what does it even mean to be a woman? It's the way that my body is perceived to other people. Why should that be a part of my identity? You know what I mean? Why does other people's understanding of my gender have anything to do with what my gender actually is? Right. And then other things, too, like typically female stuff, like what does it mean to be a woman? It's having the ability to have children. Well, not everybody has the ability to have children. People don't have--I don't have children. I never wanted to have children. I never will have children. So does that make me less of a woman? Of course not. But where does that fit into gender identity and gender expression, too? It's another kind of thing. Sometimes I do like to present as a female. I like to wear dresses, whatever, but on the other side, I don't like to be perceived as a sexual being. So there's this other conflict where I want to be myself, but other people have a conflict with how they perceive me as myself. So that's part of the autism thing, that's part of the gender expression and gender identity thing, that it's all just kind of like all of these big questions that I'm always pondering.
[11:09] Greer:
Yeah, well, thanks for pondering them with us, and I really appreciate you highlighting those kind of discrepancies between perception, projection, stereotypes and then your authentic experience of yourself.
[11:22] Jessie:
Thank you.
[11:24] Greer:
Would you mind stepping back and reflecting maybe on when you were coming up and some ways in which neurodivergence and or your experience with depression showed up in your life prior to any kind of formal diagnosis? And what did you think about those experiences at the time?
[11:45] Jessie:
Yeah, so this is really an interesting thing, too, because I'm 39 now. We all went through the COVID thing where we all turned the mirror inward, right? So we all kind of, like, had this great societal moment where we could all be interrogating ourselves. So I've been thinking a lot about this, and really up until then, you don't often get a lot of opportunities when you're hustling and struggling all the time to be quiet with yourself and to think about your actual experience. Anyway, my earliest memories. I have two early memories. One is when I went from kindergarten to first grade. In kindergarten, you have the half day thing where you don't go to lunch. You go home or whatever, or you eat lunch and then you go to school. So in first grade, that was the first time that I went to the cafeteria to eat lunch with everybody else in the school. And it wasn't a huge school. I don't know, 500 kids or something, but that's a lot of kids anyway, so I remember having intense anxiety in the food line, trying to understand what the expectations were, what the choices were, being kind of obsessed with what kind of food was available. This is another sidetrack, but also important. I grew up poor, so I had reduced or free lunch all the time. And that also gave me a lot of anxiety, being around my peers and being like, yes, I'm poor. I don't have the same, I don't have $1.20 for lunch, and then having to do all that. But anyway, the thing that I remember most is going and sitting down in the cafeteria and it being so loud and being so smelly and being so bright and echoey, and I didn't know who to sit with. And I just sat down at a table and just cried my little tiny heart out. And I cried so much. And I was inconsolable that my mom had to leave work and come to school and sit with me at lunch multiple times until I was able to self regulate enough to be in that situation that I had to be in every single day. Like, is that not the saddest thing you've ever heard?
[14:21] Greer:
Jessie! I'm completely heartbroken with this image of little six year old Jessie.
[14:26] Jessie:
I know it is like the like, I have a bit of a chip on my shoulder because on what planet Earth did a six year old girl inconsolably crying not get immediate medical attention? I did not get any medical attention ever for that, ever. The other memory I have is my mom worked nights a lot, and my sister is ten years older than me, and my brother is five years older than me. And so I ended up being my own latchkey kid a lot and spending a lot of time by myself. And one memory I have is on Christmas, like Christmas Eve, I was by myself or I don't know, maybe my sister was sleeping or my brother, whatever. And I remember going downstairs and curling up under the Christmas tree, waiting for Santa. And then my mom came home and I woke up and I was like, oh, it's Santa. And then I realized it was my mom. And then I was like, oh, my God, I'm going to get in so much trouble. And then I just waited. I just hid under the Christmas tree until my mom went to the bathroom or whatever. And then I ran upstairs and went to bed. And so that's part of it too. It's just like my whole struggle with kind of understanding what I'm supposed to do, what is acceptable, what is not acceptable. And then I've always just tried to solve everything by myself. I'm just now learning how to talk about my experiences and how this affects me. And too, part of the autism thing too, is there's the communication trouble part with it, too. It's like I can write really well. I can organize my thoughts in my mind really well, but speaking is pretty difficult a lot. And so I appreciate this conversation because it really just helps me be able to communicate what I actually experience. And that's really the hard thing for me is trying to get the right people to understand the right things about me, to ensure that my husband is unintentionally triggering me or something, or how to advocate for myself at work when I'm really overwhelmed and on the verge of a meltdown kind of thing. So this being able to kind of organize my thoughts and just have this platform and just this conversation with you especially, Greer, because you are so good at this, is very helpful for me. So I appreciate it.
[17:10] Greer:
Well, I just really appreciate that you did agree to come on and share your story in this interview because I want to acknowledge that you said that writing is an easier form of communication for you, but what you have shared is so poignant. And was there another childhood memory that you wanted to share?
[17:29] Jessie:
Yeah, so this is a later one that has to do with gender. In high school, we had an assignment where we had to make a toy. You know, my name is Jessie. My government name is Jessica, but I've always gone by Jessie. At the time, MTV had the VJs, and one of them was called Jesse Camp. And he was just so weird and goofy, and I just really liked him. And he's a boy named Jesse, and I'm a girl named Jessie. And I was like, I'm going to make a Jesse/ie doll. I made a doll out of fabric and stuffing. And on one side it was a girl, and on the other side it was a boy. And I was like, it's the Jesse/ie doll. And I got teased relentlessly for this thing, and my teachers thought I was being, like, a smart ass. And I was just like I honestly just thought it was cool. I honestly was just, yeah, sure. Like, it's a gender inclusive, gender neutral name that I share with a boy. I think it's cool. And nobody was here for it except for me. And it was just, like, really disappointing. And I was just like, what the fuck even is gender? Sorry to curse on your podcast.
[18:44] Greer:
Oh, cursing is entirely welcome at my podcast. And I'm so frustrated for you because that toy is so ingenious. How clever!
[18:52] Jessie:
Dude, right? Can you imagine this being on the market today? It would be a sellout.
[18:58] Greer:
Oh, yeah.
[18:59] Jessie:
Yes. Gender is goofy. That's my whole take on gender. Just like, let people do whatever they want. It's fine, it doesn't matter.
[19:11] Greer:
Wow, gosh, your stories are so, I mean, I feel like they're going to stick with me. They're really poignant.
[19:15] Jessie:
I have a lot of stories.
[19:21] Greer:
Well, maybe you'll have a story for: I'm wondering how has learning about neurodivergence enhanced your self-understanding?
[19:29] Jessie:
Yeah, that's a good question. I'm 39. It's really frustrating to be this age and not have anything figured out really medically wise, physical, mental health stuff. But I'm working on it. But a couple of years ago, my AFAB niece who's gender nonconforming, who has she/they pronouns, they took the RADS-R it's RADS-R Autism Test, and it is available from Embraceautism.org. I think I can share the link with you later. And it is a self administered questionnaire to help people who are, quote, subclinical or not previously diagnosed with autism, but who may have missed the clinical level of presentation to be diagnosed. So this is like AFABs, older people, et cetera. And so anyway, she took the test and got like I think, like I just took it again this morning to remind myself, this morning I got 168 on the test, and anything below 25 is definitely not autistic. Anything above 150 is a million percent autistic. My little score and their little score were exactly the same. Yeah. And so it made me feel really good because I was like, wow, my little baby niece perceives the world the exact same way as me. So that was really helpful. And two, because up till that point, I had been like, I'm definitely sure that I have ADHD. My brother and sister both were diagnosed when they were little kids, but they have that hyperactive part really intensely. And my presentation is oh, I forgot the word for it. It's more like inwardly reflected to where I kind of zone out. I daydream a lot. I go into my own little dream world. Whereas they project outwardly and they interact with people a lot, they interrupt people a lot. They have the very stereotypical ADHD symptoms where I have some of the same presentations, like forgetfulness, difficulty concentrating, needing to have the right amount of diverse experiences, like in a workplace. But then also the autism part is where I need everything to be very structured, very known; change, abrupt change, unanticipated changes are all really difficult for me. And I get very agitated and I get very angry and anxious and depressed, and then I have a meltdown. So part of this thing is understanding how the way that I am experiencing the world is giving me these symptoms. And then first off, understanding that that's what's happening and that I'm not just crazy or I'm not just weird or whatever. It's like no, this is an actual disorder under capitalism where my experiencing the world doesn't allow me to participate in the same ways that neurotypical people do. Like, I have a lot of sensory overwhelm, like I talked about when I was six or five or whatever in school, and the lights and the sounds and the noises and the people and the food and everything was just way too much. And really the thing that would have been best for me was to have--which I've started doing now as 39 years old--having the same thing for breakfast every day, having the same thing for lunch every day, knowing what my schedule is going to be. Can I be on time for anything ever? Absolutely not. But I can still do the best that I can with what I have. And so that has been really important to me because it's been empowering to understand that there are strategies and there are coping mechanisms that the ones that I have been using for a very long time no longer serve me and that I need to really be more in tune with my body and my mind and how I am reacting to my situation and understanding too. That I have the ability to self regulate in healthier ways.
[24:50] Greer:
Yeah, all of that self-knowledge that you just shared is amazing. And I really appreciate that tool that you shared. I'll make sure that goes in the show notes if anyone wants to check out that tool and maybe use it themselves. You've reflected before on how in a lot of ways, it's how our society is set up that make these differences into disabilities. And people have very different ways of relating to their own neurodivergence and even to their own mental health experiences. Some people view these as superpowers, other people view them as disabilities and everything in between. How do you think about it and feel about it in your own case?
[25:35] Jessie:
So it just depends. The thing that I get hung up on is existing in capitalism, where if I had adequate, affordable medical care, I would have way less problems in life, right. If the education system had been set up to recognize my difference and support me in productive, healthy ways rather than being disciplined. I got disciplined so much, and I think you know me outside of this. And so I would guess that you can imagine that that would be a little bit surprising because I am a very successful person. I have a bachelor's degree, I have a master's degree. I was Spanish Club president. I passed the AP English test and I tested out of English 101 in college. I got into a very competitive undergrad. I went to the best library science grad program, like, all of these things. But meanwhile, in my regular schooling, whatever you call it, I was consistently disciplined for being too much of a smart ass, really because there was a bunch of arbitrary rules to me that didn't make sense. Like, we had to say the Pledge of Allegiance. And I was like, no, if you literally interpret the Pledge of Allegiance, it's unhinged. It is insane. I'm not going to pledge my allegiance to a flag, to a country that is founded in slavery and genocide, and that continues to oppress me and everyone who isn't a successful capitalist. So then I refused to say the Pledge of Allegiance and I got disciplined. There's another fun story. In high school, I was a sophomore, I think, when the Columbine shooting happened, and part of my autism, which was very clear if you look at pictures of me when I was a kid, I was like a freak, a weird kid. I made jewelry out of toys and things that were not jewelry, like chains and locks and weird stuff like little kid jewelry. And I had goofy stuff in my hair and I wore goofy outfits, but Columbine sucked, and it was really scary. But I remember being in social studies class and my teacher, and he was also the volleyball coach, we were talking about the shooting, and one of the volleyball players, totally neurotypical girl, said, well, I think that the shooters deserved all the teasing and bullying that they got because they were freaks.
Greer:
Oh, no!
Jessie:
Yeah. And so that turned my rage-o-meter up to a billion, and I slammed my hand down on the desk and I stood up and I said, that is the problem right there. You are the problem. Because she was saying, like, yeah, you should bully people who are different. That's the correct way to be in the world. And me, who had been bullied for being different was like, absolutely not. And I'm not a violent person. I'm not going to do anything violent ever, of course. I'm the Spanish Club president. But my mom had to come to the school and I had to go and meet with the principal and my teacher and have a whole talk about my inappropriate conduct. And so my response was, it was absolutely inappropriate for her to say that and for my teacher to be defending her rather than defending me. I don't know. It's a long story, but it was just like this whole thing of always being perpetually misunderstood, perpetually not agreeing with the systems in place that are designed to keep people conforming, to be a stable class of workers to support capitalism. So being a stable worker: I am not a stable worker. It's very difficult for me to maintain stable work. Like, about every two years I change jobs because I get really hot on a job and then I get really disappointed, and then I get really burnt out, and then I have to go to find another job, and the same thing keeps happening and happening. But so now I'm kind of in this point where it's like, okay, I need to figure out what accommodations are going to work for me because I'm finally in a job--I'm a public librarian--and I'm finally in a job where I have a lot of freedom to decide how much work I can commit to at certain times, which is exactly what I need because I can't always be committed to certain things. Every day I experience the world differently. And this has to do with the PMDD thing, which we'll get into. And so I cannot consistently do the same thing every day, even though I kind of require it to be a healthy and productive person. My mental health and physical health does not allow for that. And so how can I make my full time job and my part time job of maintaining my health and my other part time job of being a thriving, full human being? How can I do all of these things at the same time and be stable and be healthy? That's my struggle in life.
[31:28] Greer:
I really appreciated it when you said the word conform, because conformity is what kept coming through to me about your stories from school, and I was thinking about, you're such a smart person, you're such a good-hearted person, you're such a justice-oriented person. But that's not what those environments that you're in in the school system or professional settings, that's not what those environments valued, and that's not what those environments were set up for. But you're cultivating this great self knowledge about how you can thrive, what structures do make you successful. You brought up PMDD, which I think is premenstrual dysphoria disorder. Did I get that right?
[32:14] Jessie:
Yeah, premenstrual dysphoric disorder.
[32:17] Greer:
Thank you. Did you want to talk about how that affects you? Because I appreciate you keep highlighting our economic system is set up to view us as workers who should be producing a certain output, and it tends to want that output to be consistent and on a schedule that was set up for a workforce that was overwhelmingly male and wasn't set up for a workforce of women. And so I think maybe you've had some experiences that can speak to that a little bit as well.
[32:48] Jessie:
Yes. You get it. I love this. Yeah. So let me pull up the kind of diagnostic thing because I think it's really helpful to have a clear understanding of the difference between pre- what does PMS stand for?
[33:11] Greer:
premenstrual syndrome. But I like to call it premenstrual symptoms. Someone gave that to me, and I thought that was really enlightening.
[33:20] Jessie:
But yeah. So the difference is premenstrual symptoms that I think everybody has who, menstruates and ovulates and all that jazz is the bloating, brain fog, the fatigue, the cramps, all of that stuff. But PMDD is very intensely experiencing these things, and it's severe mood and physical symptoms starting about one to two weeks before the start of their period. Each cycle during the premenstrual or luteal phase with symptoms subsiding within a few days of starting their period. And so I just got this very clear definition yesterday where I was like, I know this is a real thing. I know that I experience this. I don't know how to articulate this to the right medical providers who will get me this treatment that I need. So the symptoms include mood swings, feeling suddenly sad or tearful, increased sensitivity to rejection, marked irritability or anger or increased interpersonal conflicts, marked depressed mood, feelings of hopelessness or self deprecating thoughts, marked anxiety, tension, and or feelings of being keyed up or on edge. Decreased interest in usual activities like work, school, friends, hobbies, sex, subjective difficulty in concentrating, which is brain fog, lethargy, extreme fatigue or marked lack of energy, marked change in appetite, overeating or specific food cravings, hypersomnia, which is oversleeping or insomnia, which is inability to sleep, a sense of overwhelm or being out of control. Physical symptoms such as breast tenderness or swelling, joint or muscle pain, a sensation of bloating or weight gain. I have all of those things. All of those things. And this consistently month to month is two weeks of these symptoms being disabling, literally disabling. I'm so tired that I can't function. I have brain fog so intense that I can't concentrate. I can't work at the level that I would like to work at. I physically can't. I get really depressed. I get really anxious. All of these things. I get physical pain. This is another thing which, endometriosis--100% sure I have endometriosis--that's a hard thing to diagnose. But the physical pain is debilitating. It is disabling. These are real symptoms that I have every single month for the past 30 years. How old am I? 20 years. And so getting the major depressive disorder diagnosis, yes, true, it is genetic. It's in my family. I am generally like my baseline is low, but I do have periods, pun, I do have periods of time where I do feel good and energized and well and productive. And I can concentrate for about four days a month. The rest of the month I am either extremely depressed and fatigued, anxious, in physical pain, all of these things to where my body is not stable. It is consistent: it's consistently instable. It took me a long time to be able to understand that this is a real thing. I have been telling my doctors my period is intense. My cycle is intense. It happens every single month. And being able to find a provider like a PCP or a therapist or a counselor or anybody who would say right off the bat, that sounds like PMDD. I finally got a new therapist a couple months ago and I was like, I'm not going to try, I'm not going to tell her what I think I have. I'm just going to tell her how I experience life. And she was like, PMDD is a real thing. And I was like, thank you, Jesus.
Greer:
Hallelujah.
Jessie:
Yes. I've been saying this and nobody gets it. And then, so then the other thing is like, okay, how do you get diagnosed with PMDD? I don't fucking know. The good thing is I have an OBGYN appointment, I have a therapy appointment, I have a PCP appointment. And then I always thought that you needed a referral for a psychiatrist, but my therapist is like, no, you can just go do that. And I was like, great. I didn't know that. And I feel like this is another thing where maybe that sounds like basic, but I am not coming from the same place that other people are coming from. I grew up poor. I grew up with inadequate health care. My mom got her GED when she was 60 years old. I was the first person in my family to go to college, even though I'm the youngest. My grandma asked a couple of years ago if bread was protein because she didn't know about basic nutrition. I thought until I was in college that when you got old, you lost your teeth like you lose your baby teeth when you're a kid. I thought when you got old, you lost your adult teeth. Because I had never met an adult who had their natural teeth, because everybody I knew had lost all of their teeth and had false teeth. My understanding of the world is the opposite of privilege. All of this stuff I had to figure out and learn. So that's kind of another thing where I have a chip on my shoulder. It's where I hear people talk about like, oh, I got this diagnosis and I did this and I went to this doctor and I had this, and I was just like, how do you do that? I don't know how you do that. I'm just trying to figure it all out. I don't remember what the original question was.
[39:32] Greer:
I don't think I remember either. But I'm just struck by it is such a battle to even get these diagnoses and then will there be interventions that will be helpful that your providers are aware of to share with you? On the other side of it is a whole second battle that it sounds like maybe is the next one in front of you.
[39:52] Jessie:
Yes. And side story, this is a fun thing. So, like, trying to get diagnosed with autism as an adult is really expensive and it requires you have to go to a psychiatrist and then the psychiatrist has to refer you to autism testing, which is like another full day, and it's very expensive. And your insurance is probably not going to cover it because who cares? But I had this experience where my insurance at work, they were like, sent me this email and they're like, hey, you can see a psychiatrist via telehealth for free. And I was like, I'll try that because I've never seen a psychiatrist. And it would be helpful, I think. And so I go into this telehealth visit, and he's like, what brings you here today? And I was like, Well, I think I have ADHD and autism. And he was just like, everybody says that these days. Everybody thinks from TikTok or whatever that they all have autism. So what makes you think you have autism? And he was totally dismissive. And so I was, like, explaining I was trying to explain all of this stuff that I've just been explaining to you. And he was like, no, it just sounds like you have depression and this is just a waste of time, basically. And I was furious and being gaslit that hard. I hung up and sobbed and wrote down every single word that was said and sent it to all the people who care about me. And I was like, can you believe this happened to me? And then that was, like, several years ago. So now I'm healed enough from that experience to try again. But what the fuck? Are you serious? Why do we have these systems where you are seeking help and you are gaslit and belittled and it's just awful. It was just awful. Yeah.
[41:49] Greer:
I'm so sorry you went through that and for something that matters to you, because a diagnosis on paper will help you get accommodations in other situations in your life, in the future, and you're just looking to create environments in which you can thrive.
[42:04] Jessie:
Right? And so the masking thing, too, is I saw this really good meme, and it's like I have high functioning anxiety, which means I'm really good at tricking people into thinking I don't have anxiety. It's like that kind of thing where it's like, I mask so well that people are just like, oh, you're too normal. Like, oh, you're too successful. You're too smart to be autistic. And it's like, no, I'm struggling so hard in ways that you don't see that are really hard for me to communicate to you. Exactly, because you don't have these same experiences. You don't see things the way that I do. You don't feel the things that I do. Just even just acknowledging that to myself and just being like, no, for real, my experiences are valid. That has been very helpful for me and empowering myself to seek out treatments in ways that are effective for me.
[43:02] Greer:
Yeah, well, I hope you stick with it, and I hope you get things that truly are effective because it really is hard. Everything you've described today is understudied and something that we're just beginning to put more resources into. And that can be so frustrating when on the one hand, you have these epiphanies that can be really encouraging, and then on the other hand, it's like, okay, well, now what's the next step? Or what's actually going to be effective here?
[43:33] Jessie:
And so having a therapist who gets me has been huge because she has been pretty much like my life coach right now, where I'm just like, these are the things that I think that I need to do. And she's like, yes, those are the things you need to do. And I was like, okay, so I need to schedule that. And she's like, yes. She's just, like, helping me manage this stuff and work through it in ways that might be obvious to other people or whatever that has been. Really what I have needed is, like, just somebody on my side, in my corner that I can talk to freely with, who is a medical professional, who understands what I'm saying. That has been the hardest thing for me in getting treatment and diagnoses is being able to find the right people to say the right things to.
[44:29] Greer:
Yeah. And it sounds like especially with the depression, the PMDD, the neurodivergence, there would be huge overlap. And so it's hard to know where to attack it because some of the things you're experiencing are characteristic of one, two or all three of those conditions.
[44:51] Jessie:
Yeah. And getting treatment just for the major depressive disorder, it took me many tries with many different medications to find anything that was therapeutic for me. And that sucks. It really sucks. Like going through different mental health treatments when some of them make some symptoms worse or make up new symptoms that you didn't have before. And then the other thing, too, is just like trying to keep track of all this shit. It's so much stuff, and it's all overlapping, and it can be really overwhelming and it's hard to communicate this stuff. So then there's the problem with being gaslit or not being believed or making myself to feel crazy. Right? Like, am I being a hypochondriac? Am I just like going down the WebMD rabbit hole, which, don't use WebMD. Use Mayo Clinic, please. As a librarian, I beseech you. Don't use WebMD. Thank you.
[46:01] Greer:
Thank you for that professional input right there. Well, as I've been listening to you and your experiences with all these different health conditions and also neurological experiences, I'm really hearing your commitment to thriving and optimism that there is a better structure out there in the future for you, or there are better conditions under which you can thrive and you're feeling your way towards those. I was wondering if you could reflect a little bit on how these experiences have impacted what you want for your life now and going forward and how you think about the future?
[46:51] Jessie:
Yeah. So part of the being poor thing is that I didn't have a lot of resources to navigate adulting. And I'm married, happily, healthfully married for 13 years. But the two of us were in our 20s and starting out. We were both grad students, both working part time jobs, both aspiring academics that required us to move around a lot, to go to different jobs for different opportunities. And all the meanwhile, never having stable income, stable health care, stable housing, all of these things that are kind of necessary to being healthy or attacking problems, that if you don't have enough money for adequate health care, you can't really deal with your health care. And if you don't have enough food to eat, then you're not necessarily at your best to be able to do anything more than subsist. So really being poor and subsisting and hustling and struggling for a very long time, that's a disadvantage. That's starting the race later than other folks. So there's that bit of it. Then in the past about year, actually, my husband finally has stable, full time, well paying job with benefits because up until then he had been an adjunct and had zero stability. And so it was kind of dependent on me to be the person who has to keep the job, to keep the health care, to keep the family on track. And meanwhile, I'm struggling, struggling, struggling just to not have a complete meltdown and burn out. So we've gotten to the point where my job is steady, his job is steady, we have a house, we have stable transportation, we have enough money, be able to eat the foods that are good for us consistently. I stopped drinking alcohol ten months ago and that was a huge thing for me because that would have been one of my coping mechanisms that I always used, because that is one coping mechanism that is available to poor people, right? And to people with a genetic predisposition to addiction. That was a pretty good one. That one was working out for me, like not really working out for me, but that was one thing that I consistently turned to. So these kind of steps have been absolutely necessary to getting adequate health care and having the stability and having the confidence and everything. To be able to understand myself, to be able to do the research that I need to do, to understand what I'm going through, to be able to take time like this, to practice articulating that to another person. And so hopes for the future is the treatment that I would like to have, having not had treatment, is to get a chemical medical stay of ovulation. And this is just something that I just found out about this week too, because my PMDD symptoms are so intense that really, that is the most pressing thing that I have to be able to deal with in order to deal with the other things. So if I can definitively not ovulate, then we can see what my actual baseline is without these hormonal fluctuations and without this pain that I absolutely have every single month. And then we can be like, oh, yeah, definitely. All of your problems are because of your ovaries. Or like, no, your ovaries certainly are problematic, but yes, the major depressive disorder is a real thing. Or any, you know what I'm saying? It's just like the PMDD is so intense that it's like, I can't, and everything overlaps so much, it's like you can't parse out what exactly is the thing that is causing the depression, the depressive symptoms, or what is exactly the thing that is causing the anxiety without the ovulation cycle? So that is really kind of like where I feel like I need to get to, is to be able to convince my medical providers that I should try this. And then that would be like, then the next step would be like a surgical intervention to remove the ovaries or one of the ovaries or to get endometriosis surgery, which can't really be, from my understanding, can't really be diagnosed without surgery. So these are the things that where I'm like, okay, this is what I can get to if I stick with it.
[52:09] Greer: Yeah.
I'm so glad you've got that clarity about what the next steps are and what the priorities are and that you've been able to move from the survivalist state of being to an empowered, a sense that the future, there is a better future out there for you and that there are tools out there for you to kind of move forward that way.
[52:34] Jessie:
Right. And so it's good that you caught me at this exact phase in my cycle, because last week I was like, no, there's nothing for me. This just sucks. Like, just being super depressed and being like me. And then next week when I'm in pain, then I'll be, like, having very different feelings too.
[52:55] Greer:
Sure, yeah, no, and I relate to that. But I also want to validate that you took the step of making sure that this interview happened at a moment where you would have better articulacy and energy for it. We had a different session scheduled and then you reached out to me and said, I think looking at my calendar of my cycle, maybe this other weekend would be a better time. And I'm so glad you did that. I love it when women use that knowledge to their advantage and kind of move through the world with that cognizance of our cycles and how that impacts how we show up in the world.
[53:33] Jessie:
Yes. And I have to tell you, Greer, that you are the person who helped me understand that through this podcast. Not even really. And I don't know exactly how it happened, but I listened to your show and I was like one of your guests just so casually mentioning or you explaining even the luteal phase and all of that stuff, which I didn't really understand before. So then you prompted me to take these steps to understand better my own body. So props to you and thank you for doing this and thank you for asking me to be on here because it's delightful.
[54:14] Greer:
Thank you so much. That is honestly the greatest compliment anyone could give me for what is really just a hobby in my life, that it's somehow positively impacted your life. So I'm so grateful for you sharing that and you know that we have just one last question because you listen to this podcast and that is: what insight would you like to share about how we can listen well to our bodies?
[54:41] Jessie:
So it's really funny because I'm such a data nerd in other areas of life, but trying to keep track of my own stuff, like my own symptoms and everything has been really difficult. It's been really hard to figure out. Journaling--it's really hard to do consistently. Period tracking is pretty hard to do consistently. It's actually better. I figured it out. But my calendar is like, get my period, put it on there in 28 days, that's the next time that I should expect to have my period. Just figured this out, like this year, but those kind of things. But I did find this app and this is the second time that I've used it because the first time I didn't understand how to use it. Well, it's called me V PMDD. It's like me versus PMDD. And it's like a symptom tracker that is also a period tracker too. So this is giving me the data that I will need two months of data to give to a psychiatrist or whoever to be like, yes, you can see consistently during my luteal phase or whatever, I'm very depressed. Or you can see that I have consistent pain in my ovaries when I'm ovulating. So this is the stuff like keep track of your shit, know your shit. It's one thing to know your shit. It's one thing to be able to prove your shit. That's the thing that annoys me the most. It's like having to prove it. But it is helpful for me to have the data to back it up because, like, as I said, verbally articulating, what I'm trying to say is not always the easiest for me. And also, there's so many things we've been talking for an hour and a half and I can't do that every time I go to the doctor.
[56:35] Greer:
No.
[56:36] Jessie:
So that's the thing. It's like how to better understand yourself is like, for me, it was making it into data. I need numbers in a spreadsheet to show someone to prove my experience is real.
[56:52] Greer:
Yeah, it is kind of cool. You're the first guest who has kind of given a shout out to FemTech, that whole area of apps and such that have been engineered specifically for women to help us track cycles and understand our health better. And it is neat that technology and applications and software kind of were coming into their big popular moment at the same time as we are developing a wider, more popular understanding of women's health. And I think it was just very serendipitous because the medicalization of women's health was done way prior to when women's stories were centered and it just hasn't gone so well.
[57:36] Jessie:
The thing too that's cool about this M v PMDD app is that it's specifically for like that is what it is for. It's not Google. It's not stuff, like it's not a major corporation who wants your biomedical information for whatever nefarious and weird purposes that they have that aren't the same as my purposes, which is taking care of my health. So that's another thing where as a librarian, I would like to invite listeners to be sure that you are not using resources that are designed to take advantage of you, but that you are actually finding resources that are designed and intended as tools of wellness and not a pyramid scheme or whatever. It's like I am protective of my privacy. I'm protective of my body, I'm protective of my experience. I'm cautious about who I let in and who I talk to about things. And I think that it's fairly tempting to just let technology be the boss of everything. But at the same time, I'm just cautious of giving too much of myself away in ways that I don't understand how that's going to be used in the future. So that's that.
[59:05] Greer:
Yeah, absolutely. We don't want to be using apps that aren't guarding our data or actively selling our data for sure.
[59:15] Jessie:
And the other thing too, that I would say for people is just kind of advice is like find your people. One of the things that is consistently difficult for me is in the Venn diagram of me thing, too. It's like all of these ways that I identify, there are parts of people who I identify with better than other parts of people. So people who have a high adverse childhood score like me, like the high ACEs score, like people who grew up poor, had trauma in their childhoods, don't necessarily have the other same experiences of me of going to college and being a high achieving academic and all of this other stuff. And women, I don't fully fit into the woman thing. I don't fully fit into these different categories. But I do share commonalities with different people and knowing which audience or which friend or which family member or which provider, it's going to reflect back at me the thing that I'm trying to communicate well to them and just knowing that there's no other person like you. There's no other person who's going to get everything that you're trying to explain or not experience the world in the same way that you do. But finding the commonalities that you have with people and realizing that for me this has been hard just because I've always just felt like I'm always an outsider. No matter where I am, I'm always an outsider in some way. But just realizing that I have neurodivergence in common with people, I have mental illness in common with people, I have adverse childhood experiences in common with people, I have a uterus in common with people and ovaries, these ways in which I feel more of, like a community around me rather than trying to fit myself into communities that don't serve me. That is what I would like people to also feel good about moving forward from this.
[01:01:19] Greer:
Thank you. That was incredibly wise, and this was such a rich interview, Jessie, and you shared so much of yourself super eloquently, and I really appreciate all the time you gave us and the reflection and the research that went into your ability to articulate yourself this way. I'm sure that what you said is going to resonate with a lot of listeners, and I hope people will share it with other people who need to hear what you said today. So thank you so much.
[01:01:45] Jessie:
Thank you so much. I can't even articulate to you how impactful this podcast has been for me as a listener and how grateful I am for this opportunity to speak with you.
[01:01:58] Greer:
Oh, it's so good to hear that. If today's episode resonated with you, I'd love to hear from you. You can email me at femammalpodcast@gmail.com that's femammalpodcast@gmail.com. You can also follow this podcast on Facebook. Just search for Femammal Podcast and you will find a community of people who are interested in living well in our bodies. And of course, I'd love for you to rate this podcast and leave a review wherever you download your podcasts. Until next time, be well.
