Embracing the Journey: Finding Peace, Self-Love, and Community in the Face of Endometriosis with Amy Corfeli

Speaker 1:
0:03

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, elana, and this is Indobattery charging our lives when endometriosis drains us. Welcome back to Indobattery Today.

Speaker 1:
0:43

My guest is not only a phenomenal human but a phenomenal advocate. She is the host of In 16 Years of Indo and is the author of Finding Peace with a Devastating Disease. Welcome, amy Corvalli. Welcome. Thank you so much for coming on today and being able to share some of your journey. Your passion is really grounded in your journey. Can you give us just a taste of where you've been on your journey with endometriosis, and then we can even talk about the advocacy as well? But really your journey is what kick started you into the advocacy and into your podcast and into your book. So if you can give us just a little bit of your story, that would be great.

Speaker 2:
1:27

Yeah, thanks, Elana. Well, first of all, thank you so much for having me here today. Really pleased to be here. Like you said, my name is Amy Corvalli. My pronouns are she, her. I think, like most of us, my story is just pretty much full of gaslighting, dismissal and normalization of symptoms. Started having symptoms when I was in high school. We went to a bunch of doctors for like the first year, did colonoscopies, endoscopy, stool tests, neurological tests, having a lot of brain fog and fatigue and stuff like that, but of course no one found everything. Everything was normal, just like so normal.

Speaker 2:
2:09

It all happened yeah so, as everything was so fabulously normal, the support began to fall away, the support of my family, the support of my friends, the support of the people around me, just like pretty much everyone started actively gaslighting and dismissing what I was feeling, which I think a lot of people can relate to, right, and that's really hard. So then I just went through the next like 16 years with no diagnosis and living with really severe symptoms, symptoms that disrupted my college experience, my work experience. I couldn't work for a while, I got fired from some jobs. It's just living with this disease is incredibly hard. It devastates every single aspect of your life. And yeah, I got diagnosed at 33 years old and really by that point I'd pretty much given up.

Speaker 2:
3:02

I just thought that I was sensitive I just quote unquote sensitive and quote unquote weak and that I just wasn't adequate and that my body was broken and that was the reason why I was sick and it was probably psychosomatic. And the only reason I did get diagnosed is because, I guess, when I was around like 30, my symptoms, which were severe every single day, but they got even more severe I started my worst, most excruciating, unbearable pain, like probably for so many listeners. So it was with my period and, of course, every month it's like you're when I was 16 years old that break your back, scream, ride on the floor, pain maybe only happened for like two, three hours by the time I was 30, it was going on for like a week, right, and you're just like literally debilitated, disabled by pain, for more than a week in bed, ruining your life. And that pain started happening away from my menstrual cycle. So that kind of started indicating to me like maybe something else is going on here, because I started having that same, what I considered menstrual pain, but I know now it was endopain. But that like unbearable you know, crawl out of your skin, endopain, I don't know when I drank a glass of cold water or when I would bend over and tie my shoe or go over a speed bump. So I started getting these signals. You know that, okay, maybe there is something seriously wrong with me, because I had lost touch with the idea that something was seriously wrong with me. There was something seriously wrong with me.

Speaker 2:
4:33

By the time I was diagnosed I had a partial bowel blockage. In fact, every time I ate I was throwing up because, you know, but again that's gets blamed on. Plus, you know, I always have had a lot of chronic diarrhea with my symptoms. So then that gets blamed on like eating disorders, things like that, so which I didn't have. But you know, every time you go for help people, people find a reason why it's not something physical and it's like something emotionally wrong with you.

Speaker 2:
5:00

So I think a big part of my journey has been relearning how to trust myself and relearning how to have that self-compassion with myself.

Speaker 2:
5:09

You mentioned my book, finding Peace for the Devastating Disease, and these are reflections that I started writing even before I was diagnosed because you know, I think maybe it was like 28 or something, but I could no longer take NSAIDs right Like I've been taken to proxen, like it was, you know, tic-tacs for you know, over a decade and I ended up getting really bad gastritis. This was diagnosed via endostopy and I had to stop taking them because my esophagus was like being destroyed and I realized like I don't know how I'm going to live with that pain, like if I can't have NSAIDs. And I was trying to work with my doctor and we were trying things like Vicodin, tramadol, you know, tylenol, but like none of that did anything for the pain and it came to a point where it was just like I need to figure out how to be with my pain. I need to figure out how to be with my body, with myself, with my life, or I don't think I'm going to make it further Like I think, I'm going to end up unaliving myself, right?

Speaker 2:
6:13

So I think that like set me down a path of doing a lot of like emotional and spiritual healing to try to cope and find the tools to cope and also to find acceptance and ultimately try and find peace with all of the circumstances that I was facing in my life that were extremely devastating.

Speaker 1:
6:36

Right and I do feel like, for all the years, that it takes a lot of us to get a diagnosis of endometriosis, and those are years of layering on the trauma, layering on failed expectations, layering on the feeling of being a failure, of being inadequate, of being why is this my lot in life and you've had ruined relationships, you've had ruined jobs and I think that for me, I really came to terms with the fact that my body is unique. But it didn't happen overnight and, if I would dare say, I am still going through that journey now of figuring out my body is unique. My body is not made the same as anyone else's. I mean, even as an endometriosis patient, my body is still different than every other endometriosis patient and we can't quantify everyone's story the same. It's very, very different.

Speaker 1:
7:38

And what has led us to the path of this? But I think something that I've really admired about you and what you're doing, not only in your podcast but in your book, is when you're talking about coming to terms with this diagnosis and the things that you've had to deal with in this diagnosis. Can you kind of explain that even more, because I think you have such a beautiful way of allowing others to see that it is okay to find that piece, it is okay to step in a place of. This is who we are and we're going to live life continuing to heal.

Speaker 2:
8:16

Yeah, I think that you know, I think it is a lifelong journey really to find acceptance, to find peace, to find these coping mechanisms, like especially with chronic disease it's, you know, I think all of these are skills. I think it's a skill to have peace, to have acceptance, to have self-compassion, to, you know, not ruminate so much, not catastrophize so much, to be with your, to learn to be with your pain. I think all of these are skills that we can learn and that we can get better at. And something that I love is a quote by Peter Levine that says without the tools, trauma rules. And I think, yeah, I think that is just brilliant because, you know, for the first 28 years of my life, I did not have any tools, and I really mean like no tools. I came from a difficult childhood home with pretty much no emotional support, so like very, you know, stunted emotional support there by the time I was 30, I had two divorces. Okay, so my yeah, it's, I didn't have the tools. People, let me tell you, and the trauma ruled.

Speaker 1:
9:30

Yeah, yeah.

Speaker 2:
9:33

And so then, as I started learning these tools which, you know, at this point, I've been learning the tools for about 10 years Everything started to change for me, you know, and in many ways my life outside didn't change, my circumstances didn't change, my pain didn't change. My pain was still, just, as you know, bad, like passing out on the toilet, screaming writhing, contemplating if I should go to the ER. But I began to change, you know, and by me changing in a way, then my life changed right. So my life was the same and it was the same devastation, but the way I was handling it was different, the way I thought about it was different, the way I, the way I was, dare I say, embracing it was different.

Speaker 2:
10:20

And I spent so much of my life fighting against this disease, you know, fighting against. I don't want to be sick, I want things to go back to the way they were, I want to go back to normal or, you know, before having symptoms, but it's like news flashing me at. You know, you're 28, you've been sick for 12 years at this point, like you've been sick for over half, almost half your life, and at this point, more than half of my life have been sick. So at some point it became about. How can I look around me and see this life, that this? You know that this wrecking ball of endometriosis has come in and, like my life, has been devastated and crushed in many ways, I feel, you know, ruined in some ways not all ruined, but ruined relationships, ruined career opportunities. You know, how can I look at these ruins around me and this catastrophe and how can I build something with that? How can I, instead of pushing this away and saying I don't want this, I don't want this, with every bone in my body I don't want this, and say I have this, this is absolutely the only thing I have, you know this, this breath that's keeping me alive, and this like ruined landscape before me because of endometriosis. So how can I integrate this into my life? You know, how can I start building a life with endometriosis? How can I start processing my feelings?

Speaker 2:
11:50

Because I'm angry, I am furious and I. That is completely normal and natural. Of course I'm angry, of course I'm furious, but you know what? That anger is destroying me, maybe even more than the endometriosis itself. Like that anger is festering inside of me and I'm bitter and I'm mean and I'm cruel and I trauma dump all the time and I whine and I never smile and, like this disease is, has and is destroying my life, but also, like the way that I'm facing it is also destroying my life and I think to look at your life and look at yourself, you also have to learn to cultivate so much self-compassion, because this isn't a case of saying like, okay, now I'm gonna be mad at myself because of the way I've handled it.

Speaker 2:
12:39

It's been really poor for 12 years. No, no, the way I handled it was the best that I could. There's no manual for dealing with getting sick when in your last year of high school and then, like you know, crapping on the sidewalks in front of people because your diarrhea was so bad and bleeding through your office chair on the first day of work and falling down in the subway and everyone gawking at you because you know, and like calling 911 and the ambulance. There's just, there's no manual to live with these moments that we are living with, right. So, cultivating that self-compassion and saying like I'm doing the best I can I really am, and but I also realized that I wanna do it a different way you know.

Speaker 2:
13:24

So how can I start learning a new way, how can I start learning new tools, how can I start learning a new way to grow? And how can I give myself that grace during this whole process as I change and I try to change who I am and change the way that I feel about my life?

Speaker 1:
13:45

I feel like giving ourselves grace is one of the hardest things to do, because we are our worst critics just in life. In general, I feel like we tend to be less generous with the grace when it comes to us because we have to live in our bodies and we have high expectations of ourselves or, adversely, because people haven't believed us for so long that maybe, just maybe, they're right, you know. And so we second guess ourselves constantly. And so when it comes to grace, we second guess do we deserve the grace to feel the way we're feeling? Do we deserve the grace to walk a life that isn't easy to walk and say, you know, you're having a flare and you're supposed to do something, having the grace to say I can't right now and be okay with that and not feel like you need to beat yourself up for not being able to do something.

Speaker 1:
14:44

And that's really hard when society is not in that bubble and that space with us, right, and we mentally wanna be out in the world of normal, normal, whatever normal is right. We wanna be in that world of normal, but ultimately we're not. We don't feel normal, we don't feel right, we don't. You know, we have an insurmountable amount of fatigue that we can't navigate normally. And so how do we give ourselves that grace? How do we change our mindset into thinking it is okay, it is okay to grieve this, it is okay to give ourselves grace? How do we switch that mindset from trauma mindset to that grace?

Speaker 2:
15:32

mindset, yeah, I think, giving our self self compassion. A lot of people talk nowadays about self compassion and self acceptance and you know, at the beginning, when I first learned about this, I was well, I was very also, I was very like bitter, but I would remember just like rolling my eyes and be like, oh God, this is so stupid, you know. And now I think it is just like so crucial and so vital because we have to live with ourselves and I think the self-critic, like you said, is so strong and the self-critic, the self-critic, is bred over, you know, years, decades of every single day interactions with the way society. I mean, first of all, let's talk about I mean there's not time, so in brief passing, we'll just say, like there's ableism, racism, ageism, like you know, there's so much discrimination and bias and expectations that are completely unrealistic and racist and ableist about the people that we quote unquote should be in society. About how productive we should be, about how you know what we should look like to meet some made up unachievable beauty standards. For me, something that helped a lot was like learning that a lot of the pressure that I've put on myself and a lot of this inner critic voice that I've internalized isn't my own, you know, it's what I've been taught. It's the people who have said to me, like you're not smart enough, you're not beautiful enough, you're not you know XYZ enough, you're not productive enough, you're not this, you're not that, you can't rest, you're lazy, like all of that coming together and then, like you said, the years and years of dismissal, gaslighting, that messes with a person psychologically. You know, and so it's. I think it's easy, it's natural, to internalize all of that and then bully ourselves and then be our worst bully.

Speaker 2:
17:29

I think something that helped me a lot is, first of all, learning that most people have a very angry self-critic inside, that this is a real thing. You know the self-critic, the judge inside. There's whole books written about it, there's workbooks. I think it comes back to trying to find those tools. Maybe for some people that is working with a mental health professional. For me, that was like reading books about the self-critic and doing online worksheets that are designed to be done, you know, on your own, like exploring your inner voice, right, getting more self-awareness, getting more mindfulness. For me, meditation was really big. Not everyone has to meditate, but I think finding that self-awareness, to start hearing the way that you talk about yourself.

Speaker 2:
18:16

You know, I noticed for myself it was like every time I was in a flare I just totally berated myself and beat myself up. It was like you're in a flare, you're lazy, you're a loser, this is your fault, this is cause you ate XYZ, this is cause you're weak. How much more horrible am I making the experience? I'm already in a really difficult. I'm already in pain. I've already canceled my plans. I mean it's really, it sucks. You know it's horrible. And then I'm saying to myself this is your fault, you're a loser. Why can't you get it together? Why are you still sick?

Speaker 2:
18:47

So for me, a lot of my personal journey has come from starting to be more self-aware of the things that I say to myself. My self-critic was so strong. I think I also have a lot of rumination and truest of thoughts and when I would start criticizing myself, I would find ways to stop. You know, sometimes I would just be like stop, stop, like take a breath. It feels stupid at first, especially when I fervently hated myself, like I loathe myself.

Speaker 2:
19:14

So when I was saying to myself you're so stupid, you're lazy, like it's your fault, you're sick because you did whatever, like you ate whatever food, you didn't take a walk or whatever, whatever thing, I was saying, that was my fault. It feels so normal and natural. It feels like those are the right words, cause that's a story you've lived with your whole, probably your whole life where you're like no, this is it is my fault. No one argued with me, I would you know. I'd bet you a million dollars, this is my fault. And so learning to like, start separating ourselves from that story and be like okay, wait, would I say this about my child or about my loved one? Would I say this about my cat? You?

Speaker 2:
19:49

know if you don't you know right Cause for me it's like I wasn't very close to my family, so I was like I don't want to think about them, but like let me think about my pet. Like let me look at my little, cute little baby when she has diarrhea. Would I be like this is your fault, suki, because you went and you like licked the floor in the wrong spot? Like no, I'd be like, oh, my baby sick. So it's like learning how to, learning how to, how to love yourself and how to treat yourself with that kindness, and it is.

Speaker 2:
20:17

It's a long journey for some of us, you know, depending on how deep those roots of self-loathing are, or you know how deep our shame is. Shame was a really big one for me. I was so ashamed every time I had a flare. I was so, so ashamed. Every time I was sick, or every time I didn't feel like I was my best self, or I had brain fog and I stumbled over my words around people. I was so mortified and so ashamed. So it's like finding these tools first of all, finding the awareness and then finding the tools, and that could be, again, mental health.

Speaker 2:
20:53

For me, tapping emotional freedom technique was a really big one when I'm feeling a lot of shame, you tap these pressure points in your face and you say out loud something like I love and accept myself, even though I bled on a chair at work and people saw. I love and accept myself, even my blood on a chair at work and people saw. And it's really hard to get those words out when you're feeling a lot of shame. Like those words, they feel like I can't say them because they don't feel true. But the more you practice these tools, the better you get.

Speaker 2:
21:23

And I think now, like self-compassion is probably the biggest gift that I've ever given myself in my life. Bigger than having excision surgery, which obviously was a very big one to help me start feeling a lot better. Bigger than my career taking off. Bigger than, dare I say, getting my most wonderful kitty cat, who I love, in the world. Like, I think, self-compassion and learning to say I live with myself, in my body and I have to learn how to accept and love myself throughout everything in life. That's really hard but I think that is one of the most beautiful and most liberating things that you can do for yourself in your life.

Speaker 1:
22:08

Yeah, I think it's true, like just having an ounce of self talk that's positive makes a massive difference. I remember one time this is when I was probably early college, I wanna say A friend of mine. I was sitting there and he said, alana, you did so good with this, or I can't even remember exactly the compliment that he fed me. And I turned back around to him and I said, oh thanks, you're so great at this and you're so great at that. And I was like and you know, I didn't think it through and he goes, alana, stop, he goes. I want you to accept that. I just gave you a compliment. I'm not giving you this compliment for my benefit or even for yours, but I'm giving it to you so that you understand what people see about yourself. And I was like okay, he goes. No, no, no, no, I don't think you hear me. I think you need to accept the compliment that I'm giving you. I don't need one back. And I was like, okay, all right, I don't know how to do this very well, I'm really good at self loading, I'm really, you know, and I think that it took that, I don't. It took that one moment and that one person telling me, I'm not giving you this compliment for my own good, I don't need any rebuttal, just accept it. And I was like, okay, I really dealt with a lot of self doubt and a lot of insecurities growing up in regards to how I felt most of the time, because I think that I was in a constant state of feeling blah, you know, and Demetriosis doesn't really, you know, make you feel pretty most of the time.

Speaker 1:
23:57

You, I know that sounds, why doesn't it? I guess, sounds so pretty. But I just I really struggled with that and I had another friend of mine was like you look so pretty today and I was like, oh, thanks, you're looking great too. And they said, no, can you just accept that compliment? And I think that what you're doing so beautifully and you explain it so well is just accepting who we are and not shoving off the positive stuff. Because I don't know about you, but I do feel like it is really easy to consume negative thoughts. It's really easy to consume criticisms from others and from ourselves. What's really hard is to consume positive, affirming thoughts and actions and beliefs, because of trauma or because of any number of things that we've walked through. How was it for you in the last, say, couple years, learning that you may not ever be 100% and kind of accepting that we may not be 100%, but it's about the growth that we take and the change that we make.

Speaker 2:
25:10

Yeah, I love this question. Before I answer it, I feel, if I just go say one little thing off of what you said about the positive comments, I think too, it can be really hard to go from self-loathing to then like self-positivity. So I think self-neutrality is something that I've always aimed for. So, for example, say you're looking back, because I think it's easy to look back and have a lot of regrets now that we have hindsight. I look back at some of the choices I made about my treatments. Right, like I went on depo per vero when I was young. That's what the doctor presented to me. She told me my only option was depo or live with it, of course, and I was like 18, so I was like, okay, well, yeah, depo, let's do it Made me very, very sick and of course, everyone has different experiences on these drugs. That was just my personal experience. But later I was really angry with myself because when I'd asked her are there side effects? She told me there was no side effects, which felt very fishy in the moment. But she was like, no, no, there's no estrogen, so there's no side effects. And I was like, okay, great, well then, yeah, shoot it in my butt. And later, when I became very just had a horrible experience, especially with my mental health, with depo per vero.

Speaker 2:
26:20

I was really, you know, pre-amy finding herself compassion that Amy hated that 18 year old Amy hadn't pushed back, hadn't gone online to look at, hadn't been made an informed decision, hadn't known to do that. And now, when I look back at that difficult moment in my life, all I feel is love for that girl because I think about who Amy was at that time. She was 18 years old or 19. She was by herself in the appointments. She was by herself in between her college classes. She had no idea what was going on with her health. She was scared. She'd been sick for three years. At that point no one knew it was happening, no one. Everyone was saying that it was in her head and it was psychosomatic and everything was normal. She was so lost and she was so scared and she was struggling so hard.

Speaker 2:
27:13

In that appointment with that doctor who was misinformed and you know it was back when I still had my trust my it's just like, you know, 100% trust and faith in my doctors were now like oh yeah, thanks, I'll think about it and research everything you say before I make a decision, but that Amy was so different back then and that Amy just deserves a huge hug. You know it doesn't deserve that. I go back and I continue to berate choices I made. What 20 years ago at this point, like Amy, come on. So I think, yeah, just for me learning to not look back with positivity and be like, well, it's okay, I mean, you did your best and like, you tried, no like, but just look back and be like neutral about it, right, like it wasn't a choice I would make now, but it was a choice. I made them because I was doing my best and that girl deserves a hug for doing her best.

Speaker 1:
28:11

I wanna hug that girl too. Yeah, I wanna hug her. She was so cute.

Speaker 2:
28:18

I wanna hug everyone on this podcast, so thank you for letting me add that. But to answer the question that you asked me about, you know, kind of making peace with the fact that maybe I'm never gonna be symptom free, and I think it was funny I put this up on Instagram like a couple of months ago and I just said like I think I finally accepted the fact that I'm never gonna be symptom free. I've been sick for 20 years and what my symptoms have looked like in that time has changed, you know. I think now they're a lot less severe. I think before, for many years a decade or more I was living at a eight out of 10, 10 being the highest symptoms, and eight out of 10 with spikes to 10, you know, during my period or during a bowel movement, I think. Now I'm probably living at a four, and the spikes that I have are maybe a seven on the worst day. But there's not a lot of spikes now too. They're not very frequent, maybe like once a month. So I think I'm doing like so well, you know, and I think if someone who wasn't chronically ill was like, oh my gosh, you don't feel good every day, and then be like feel sorry for me or like feel sad, but I just feel thrilled, like I feel thrilled that I have a tolerable baseline and I know how to cope. I know how to manage the symptoms I have. I have all these tools. Now I, you know, I give myself permission to rest. I have that self compassion.

Speaker 2:
29:54

I actually give myself a hug a lot Sometime when I'm having a really bad day. I sit on the floor, on this rug, you know, I cross my legs, I put my arms around myself, I squeeze really hard, I close my eyes, I start rocking back and forth and I say to myself you're gonna be okay, you're gonna be okay. And I just squeeze myself and I hold myself and I rock sometimes and I put on like music or I might do like chanting from YouTube or something, and I'll do that maybe for 20, 30 minutes and share Maybe someone's listening and going well, that sounds silly. No, when you're in this, the depths of grief and hopelessness and despair. But you find a tool which for me, that's my tool and for someone else they have different tools and we all have different tools. But to have a tool where we can use our tool and come out of that tool, come out after using that tool, feeling a little more revitalized, feeling a little more hope, processing our feelings or our grief, not getting stuck. I think that tool, that rocking back and forth that helps remind me that I'm gonna be okay, that helps give myself support by hugging myself. The rocking is soothing, so it's like all these things come together to help support myself.

Speaker 2:
31:12

So, yeah, when I put on Instagram this idea that I don't think I'm ever gonna be 100% symptom free, I'm okay with that. I think my goal for so long was to be 100% symptom-free at whatever cost. Now my goal isn't about being symptom-free. My goal still does include having a tolerable baseline, because obviously, when you're at an 8, 9, 10 every day, that's a really difficult way to live your life. My goal now is really about my quality of life. My goal now is about what you said, you know having meaning in my life, having purpose, having moments of joy, having a reason to get up every single morning, having a life that I feel is worth living. Even though I have endometriosis symptoms. That's a part of my life, just like the way my hair is black and I have a kitty and there's cockroaches in my kitchen right now.

Speaker 1:
32:14

Oh no, oh dear.

Speaker 2:
32:16

But like that's just, this is my life and how can I make this life that I feel is worth living? And that's the goal that I have for myself now. And whether or not I become symptom-free, I don't care anymore, that's not important to me.

Speaker 1:
32:35

There's so much truth to just not only accepting where you're at, but allowing yourself we talked about grace, but to step back and evaluate even where you're at. I think there's. You know, you don't have to get it right the first time, and I think that we have these unrealistic expectations that we will do everything right the first time, and we were talking about this. We do not do things right the first time. That is why we're able to grow and to learn, and I think you hit the nail on the head when you talked about the fact that you wish you would have. You know, we can't live in the we wish, we wish. We wish we would have known. Instead, I think, if there's so much value in saying we did the best we could with what we had, now it's time to move forward.

Speaker 1:
33:26

Am I missing out on things still? If you are, then maybe that's another way of evaluating where am I missing out and why am I missing out on these things? But it also accepting that you aren't always going to get it right and moving forward in figuring out how to improve your quality of life Not necessarily that it's going to be perfect, but to improve your quality that I will take any day of the week over perfect, because improvement is better than stagnant, and I just think that there's we need to have that mindset sometimes at least for me, I need that mindset. I don't have to be perfect.

Speaker 1:
34:07

If I'm improving, I'm not stagnant, and that's true with our emotions, it's true with how we process our trauma, it's true with how we communicate to others and how we do advocacy work and how you know it all ties in. What are your next steps to improvement? When it comes to advocacy and accepting that, although this is a nasty disease, it's kind of catapulted you into the space of helping others and I think that that's valuable too. It's not nice sometimes what this disease does to us, but we can be nice to others and helping them. What's your next step for that and has that been beneficial in that healing process?

Speaker 2:
34:50

Yeah, I think since I made my platform, I've always tried to be very transparent with everything, really like my thoughts, my struggles, my next steps, my healing journey. I think I've really just tried to share openly and I think sharing our stories helps a lot. Seeing that other people identify with our stories helps a lot. I think that this disease is so isolating and it is so easy to feel desperately alone.

Speaker 2:
35:23

And I know for such a long time I didn't know I had ENDO, so I didn't know this community of 200 million people existed. I didn't know that there were people who understood what I was going through, who were going through something similar. I had no idea and I was so desperately alone. So I think finding community is so crucial and so vital, I think, for all of us, especially for a lot of us. Maybe we don't have that family support, we don't have people in our lives who believe us, and that is absolutely emotionally gut-wrenching to be in that place and trying to be there for people through my podcast, through my book, providing that emotional support. So, yeah, I think next steps is just continued advocacy, continued talking about meeting people, sharing where we are.

Speaker 1:
36:16

Which is powerful, because your book okay, we're going to talk about your book for just a second. So, if you have resonated with what Amy has been talking about, she wrote her book just for you and probably for you too. That had to have been healing for you to write this book, to really go back and retrace some of these steps. Tell us a little bit about what's in your book, because I think this is going to be a really good tool, talking about the different tools that maybe you didn't have growing up, but how we can get those tools and put them in our tool belt or our toolbox, how we can kind of cope with this disease. This has to be a valuable tool for a lot of people. Was it for you, and what do you hope people get out of your book?

Speaker 2:
37:07

Yeah, I think that for all these things it's so important to recognize that we're all individuals, we all. Different things resonate with different people, different tools for different people. I am a firm believer that I do think we can all find peace. But I do think peace is ongoing because even 10 years later, some days I have a lot of peace and some days I'm just like I'll try for peace tomorrow. Today I'm just going to stew in a bit of anger. So I think these concepts they're ongoing, they're flexible, they're changing, they unfold alongside you and I think there's different building blocks for acceptance and for peace and for some people that could be. It's just going to depend what we need in our life. For some people it might mean you need to find more meaning in your life. Maybe it's just like your life feels really empty. For some of us it might be finding more support, finding community. For some of us it might be getting more self-awareness of our thoughts, like we were talking about working on our self-critic, that judge in our head. So I think there's so many different aspects and different ways that we can try to propel ourselves forward, to start feeling differently about our life, our body, our disease. I think I've always tried to be really compassionate in my approach, whether it's my book or my podcast, because I really want to meet people where they are, because sure, I could get on here today and see like, oh, I feel, like I'm really fine, I found peace and I'm finding peace with my life, and sometimes it can be easy to forget that I've been doing this for 20 years now. So this is like, like I said, their practices. So I think, yeah, just meeting people where they are and saying if you're in a place right now where you're just, you're so furious and you're so angry, that's okay, that's to be there. I was there for a decade. If you're in a place where you're like I'm grieving, I'm grieving and the idea of having peace or hope or any moments of joy right now, that feels absolutely like a devastating black hole that I'll never get out of. I know those feelings too, you know, and that's okay to be there too.

Speaker 2:
39:20

So with my book, it's basically reflections on all these different topics that we've been talking about. They're just, they're short reflections, which I think is very helpful. When you have fatigue and you have pain, it can be really hard to read and to pay attention. I also. The audiobook is coming in March 2024, so I'm super excited about that. I'm reading and producing and publishing that.

Speaker 2:
39:42

But yeah, just like you know reflections about, about our self-talk, about our pain, I want to make sure that it felt very validating.

Speaker 2:
39:51

I put in reflections of a couple of my doctor's appointments or a couple of times people dismissed or gaslit me or even moments of extreme pain.

Speaker 2:
40:01

You know I've had a lot of people message me and be like I'm only on chapter three and I'm already sobbing because I finally feel like someone put into words what I've been feeling like with my pain but I've never been able to express it. And I think those you know those messages are. They're so beautiful to get but they're also just so rewarding to realize that we're not alone in this right and we feel again. We feel so alone because when we're there in the worst, most backbreaking pain on our you know bathroom floor vomiting and you know pooping at the same time, like it doesn't matter if we're surrounded by a billion people saying like pet petting our back and saying like you're going to be okay, like you're alone and you're in your pain, but there are people who understand your pain and there are people who, you know, have maybe found these tools, like we're saying to, to try to live a little better with our pain.

Speaker 2:
40:59

And I think that the goal of all of my advocacy is just to try to help people live a little better, to find a tool that works for them to have a better quality of life, whatever that looks like for them. And I just want to remind people that it really does take time and it really is just one little baby step, one little baby step, one little baby step, and sometimes it's so imperceptible and those, those steps will add up and one day you look back, like me, and you'd be like, wow, it's been 10 years. And like that Amy who was so scared and loathed herself and already had two divorces at 30 and had like no friends and like just whined and trauma dumped and cried and grieved and, you know, had suicidal ideation, like that Amy is not there anymore. And this is totally different Amy here today and it's kind of like I don't know how I got here, but I do know how I got here and so, yeah, I just I really want to leave people with with hope.

Speaker 2:
42:03

You know that things can improve. And even if things don't improve, maybe we can change, and we can. We can change the way that we feel about our situation. There are things I'm never going to get. There are things that I've lost to this disease, that I will never get back. They don't hurt half as much anymore because I've been able to find peace with them.

Speaker 1:
42:24

Yeah, oh, it's so powerful and so good. You are such a light to so many people, and I think that validation can come in different forms and sometimes we just need oh, someone else has lived through this to allow us to accept where we are at or where we've been. And I think we've talked about accepting and grieving and these words may seem unattainable to some people, but it's not and the the community aspect of having endometriosis and living with people that have endometriosis surrounding you, supporting you, is so invaluable. You can't put a price tag on that, because healing comes from those that you're around. Sometimes, too, when you don't have the strength to give yourself the grace or you don't recognize that you are grieving Sometimes I think that that is a really tricky thing to recognize is am I grieving or am I just a negative, bitter person right now?

Speaker 1:
43:28

No, you're grieving. You're grieving what you've gone through. You're grieving where you're going and you're grieving what you thought your life would be, and that is okay. That is okay to do that. So thank you for taking the time to really speak into that and speak into people's lives, and this is let this be your permission to walk through that. Let this Amy gave you permission and her. Her book is coming with her voice, which is also super soothing and calming. So I recommend, when that comes, to download that the audible version of it. I don't know if it's unaudible, I just said that, but I just it's. I want you to get this book for your sake, because she does this path so beautifully and it's not perfect, and I think that that is okay too, and that's what makes it so great is that it's not perfect and we aren't perfect. So, amy, thank you so much for joining me today and taking your time and just giving all the knowledge and wisdom that you have. I just so appreciate you.

Speaker 2:
44:29

Well, thank you so much, Alana.

Speaker 2:
44:30

I really appreciate you inviting me to come on your podcast and yeah, I mean just final words is to everyone give yourself permission to be exactly where you are, to feel exactly what you feel.

Speaker 2:
44:43

And maybe you look around and you're like I don't like where I am and I don't. Maybe I don't even like the person that I am, like you said, alana, like bitter and trauma-dumping and crying all the time. But give yourself permission to say it's okay that I'm wherever I am, it's okay that I'm here and slowly I can learn the tools and I can learn the practices to change where I'm at and to try to have a life that is more aligned with what I want. And maybe we cannot get back everything. You know, my life looks different than I thought it would look like, but it's still a life worth living. So I really want to just leave everyone with that. I want everyone to just I want to give everyone a big hug right now and say that I'm so proud of all of you because it is so, so difficult to live with this illness.

Speaker 2:
45:35

It is, you know, practically impossible. And we're doing it every single day, even if we're not doing it the best that we think, or you know, someone is doing it better, like who cares how someone else is doing it and like almost who cares how we're doing it, like we're doing it and getting through those unsurvivable traumas and moments. We got through them, you know, and I think we deserve a pat on the back to ourselves to say like I'm getting through my life and of course, I want to do more than get through my life. Right, I want to live my life, but there are days when we're just going to get through. And I still have those days and I just pat myself on the back and say, you know, it's okay to just be where you are right now. Things can change.

Speaker 1:
46:15

It's okay to sit in a space for a second. We just can't live there because that's not living right. So, amy, thank you so much. If you want to continue hearing more of what Amy is talking about, she has her podcast again in 16 years of Indo is the name of her podcast, and she is not only an advocate and speaks so elegantly, but she's really coming up with some amazing things, so you'll want to follow her. She's doing really, really great work and, until next time, continue advocating for you and for those that you love.