When Doctors Don’t Believe You: Living with Endometriosis - Katie Donlevie
The emotional toll of being dismissed by doctors, and the impact of finding a supportive community and advocating for oneself.
Katie Donlevie - Bio
Empowering individuals facing chronic illness and pain challenges to reclaim their identity and thrive beyond survival mode.
I work with individuals facing chronic illness and pain challenges to reclaim their identity and thrive beyond survival mode.
Specializing in guiding people through transformative journeys, I help you rediscover yourself and re-engage in life outside of your condition. I am dedicated to helping you redefine success, bring your chronic illness back into harmony with the rest of your life, and stop fighting against your body every day.
Through my podcast, “My Chronic Illness and Me,” I also hold space for insightful conversations with people dealing with chronic illness and pain to offer support and foster a sense of community amidst what is often an incredibly isolating experience.
Ready to stop just surviving and start thriving? Let’s connect!
Contact Links:
Summary
Countless doctors, endless tests, and being told your pain isn't real. How would you keep fighting for a diagnosis and the care you need? Katie's journey with endometriosis is one of perseverance and self-advocacy. She spent years prioritizing work, pushing health aside, and gritting her teeth through the pain, only to come home in tears and crawl directly into bed at night. Despite constant dismissal from doctors, she continued to advocate for herself.
In this episode, Katie shares her emotional struggles, the importance of self-advocacy, and how finding a supportive community transformed her life. She discusses the crucial role of community and the power of sharing personal stories to combat the stigma surrounding invisible conditions. Katie delves into the emotional toll of continuously advocating for herself in the medical system, detailing how this struggle impacted her mental health and ultimately led her to leave her job and become a health coach.
Katie now defines success as "taking care of myself, listening to my body, and building this work and helping others while also being a good partner, a good sister, a good friend." We explore the pervasive stigma surrounding endometriosis and other chronic illnesses, the societal need for greater understanding and support, and the power of communication in fostering empathy and open dialogue.
Overall, the episode highlights the need for empathy, understanding, and proactive communication in supporting those with chronic illnesses, and underscores the importance of self-advocacy and community in navigating these challenges. Join us as we explore Katie's powerful story and the lessons it offers on advocating for yourself and breaking the stigma surrounding chronic illnesses.
Takeaways:
Isolation and Community: Chronic illness can be isolating, but sharing stories and fostering community helps combat stigma and provides vital support.
Challenges in Self-Advocacy: Advocating for oneself in the medical system is challenging, with many experiencing dismissal and gaslighting by doctors.
Importance of Self-Care: Redefining success and prioritizing self-care are crucial in managing chronic illness and improving quality of life.
Role of Support Systems: Having a coach or support system is instrumental in navigating the emotional and mental toll of chronic illness and advocating for oneself.
Understanding Endometriosis: Endometriosis, one of the world's most painful conditions, affects one in 10 women and is often misunderstood and dismissed as just a painful period.
Combating Stigma: Ending the stigma of chronic illnesses requires societal recognition and support, as well as individual self-awareness, communication, and continuous self-advocacy.
Definition, Resources and Example Accommodations:
Definition:
Endometriosis is a disease in which tissue similar to, but distinctly different from, the tissue that lines the uterus grows outside of the uterus. Endometriosis tissue can cause severe pain, infertility, and organ dysfunction due to inflammation, invasion of organs, and scar tissue. Approximately 1 in 10 people worldwide who are assigned female at birth are impacted by endometriosis, and in rare cases, it can also impact people assigned male at birth. There is no cure for endometriosis.
Resources:
An online learning library that includes dozens (or hundreds) of articles, medical papers, research documents, podcasts, videos, etc. about endometriosis.
It also includes a list of expert surgeons who have been vetted as being experts in the excision of endometriosis.
The medical care center in Atlanta, GA has lots of good resources and also does free case reviews for patients.
Examples of Workplace/School Accommodations:
Workplace Accommodations:
Flexible Work Hours: Allowing flexible start and end times or the ability to work from home can help manage pain and fatigue.
Telecommuting Options: Providing options to work remotely during flare-ups can reduce the physical strain of commuting and office work.
Ergonomic Workstations: Ensuring access to ergonomic chairs and desks to alleviate discomfort and prevent strain.
Extended Breaks: Allowing additional breaks throughout the day to rest, manage pain, and take medications.
Private Rest Areas: Providing a quiet, private space where employees can lie down or rest if needed.
Reduced Workload: Adjusting workloads during severe flare-ups to prevent overwhelming stress and exhaustion.
Access to Restrooms: Ensuring easy access to restrooms and allowing frequent restroom breaks without penalty.
Supportive Management: Training managers to understand the condition and offer support and flexibility.
School Accommodations:
Flexible Attendance Policies: Allowing for excused absences or the ability to make up missed work due to medical appointments or severe pain.
Extended Deadlines: Providing extended time for assignments and exams during flare-ups.
Flexible Scheduling: Allowing students to take a reduced course load or schedule classes at times when symptoms are less severe.
Private Rest Areas: Offering access to a quiet, private space to rest or lie down during the school day.
Access to Restrooms: Ensuring frequent and unrestricted access to restrooms.
Note-Taking Assistance: Providing a note-taker or recording lectures to help students who may miss class or have difficulty focusing during flare-ups.
Remote Learning Options: Allowing for online classes or assignments to be completed at home during severe symptoms.
Physical Education Modifications: Adjusting physical education requirements to accommodate pain and fatigue levels.
Chapters:
00:17:16 Redefining Success and Self-Advocacy
00:33:16 Chronic Illness Stigma and Self-Awareness
00:39:42 Embracing Truth in Chronic Illness
Transcript
Katie Donlevie
00:00
I know there's something and you know it turns out that I was right that whole time. But it felt so isolating. I felt like I was just kind of fighting by myself to get anyone to believe me.
Tim Reitsma
00:17
Countless doctors, endless tests and being told your pain isn't real. If this is you, how would you keep fighting for a diagnosis and the care that you know you need? Hey, tim here and thanks for tuning in to another episode of the Invisible Condition Podcast, where we talk about advocacy and unusually normal things the conditions, diseases and illnesses we live with. We will end the stigma of invisible conditions by empowering voices, and today's voice is brought to us by Katie Dunleavy, founder of Revive and Thrive Coaching and of the podcast my Chronic Illness and Me.
00:51
Katie's journey with endometriosis is one of perseverance and advocacy. She spent years prioritizing work, pushing health aside and just gritting her teeth through the pain, only to come home at night in tears and crawl directly into bed. Despite consistent dismissals from doctors, she continued to advocate for herself. Katie shares her emotional struggles, the importance of self-advocacy and how finding a supportive community has transformed her life. She now defines success as taking care of herself, listening to her body and building a business that is helping others, but also being a good partner, a good sister and a good friend. Have a listen, katie. I'm excited that you're on the show. You invited me to be on your show not that long ago and it was a great conversation and I knew that I needed to bring your energy to the Invisible Condition podcast, so I appreciate you joining us today.
Katie Donlevie
01:52
Yeah, I'm so excited to be here. I absolutely love the conversation that we had For my show. I was listening back to it the other day to do some editing notes and I was like giggling to myself as I listened to it. So I'm really excited to talk to you again.
Tim Reitsma
02:08
Yeah, I've had some feedback from friends and from family of just how good you are at interviewing and it really shows. I know you're a coach and we're going to get into that a little bit as well, so, um so, for before we even get to, uh, I want to actually introduce your show before, uh, we even get to, I want to actually introduce your show before we even get into the conversation, not save it to the end. But what's your name?
Katie Donlevie
02:28
Yeah, so thanks. My show is called my Chronic Illness and Me and basically it's honestly not that different than your show in that I have people on who have all kinds of different chronic illnesses and we just talk. We just talk about their lives and their experiences and their journeys and really the point of it is just to help foster community, as I know, you know, it can feel so isolating to have a chronic illness sometimes. So I just want people to be able to share their stories and to see themselves and their own experiences reflected back in the experiences of others experience is reflected back in the experiences of others.
Tim Reitsma
03:13
Community is a word that keeps coming up over and over, and I've met others now who are in this space, this invisible conditions, chronic illness space, and there are great shows, like yours as well as others, and so this is how we're going to end. The stigma, um is, we are going to continue to tell stories. And I was asking my seven-year-old daughter uh, we were talking a little bit about invisible condition and she answered a couple of eye rolls as I was asking her questions for her, uh, for her to like, she's like, come on, dad, I just want to color, and. But we got to a point where she said, dad, we just need to talk about this stuff.
Katie Donlevie
03:44
It's so true.
Tim Reitsma
03:45
That's how we're going to help people, and so if somebody's listening and that's all they take away from this episode, you're not. You're going to take away more it's. We need to continue the conversation. That's awesome. Before you know, I sent you a kind of a script or a flow of where I wanted to go, and I was pouring through your website and I want to start a little differently, and I'm actually going to read a little excerpt that you have on your website and it says I spent years prioritizing that work, or the work that you're doing, pushing my own health aside and gritting my teeth through the pain during the day, only to come home in tears and crawl directly into bed at night. That's heavy. There's a lot of emotion in that. Let's start there. Talk to us about what was going on.
Katie Donlevie
04:32
Yeah. So I first started being in a lot of pain all the time when I was a teenager and when I was 17, I went to the gynecologist and they said oh you know, you might have this thing called endometriosis, but don't worry about it, we'll put you on the birth control pill. And they kind of just like sent me on my way without really explaining what that was or what to expect from it. So, you know, I just kind of did, I just went on my way and went about my life and then in my mid-20s I started to just be in a lot more pain all the time and it basically progressed. It just kept getting worse and worse and worse for I don't know five to seven years and I would you know on the website I say I pushed my pain down.
05:25
I did, and I didn't Like I would go to the doctor. I went to dozens of doctors. I went to GI doctors. I had multiple colonoscopies before I was like 24. You know, I saw pain specialists and allergy specialists and pain specialists and allergy specialists and naturopaths and nutritionists and et cetera, et cetera, et cetera.
05:49
And I always kind of said you know this one doctor when I was 17 said the word endometriosis. Could my pain, could my stomach problems, could my back pain, could my headaches, could my, like, deep pelvic pain be related? And every doctor you know would take tests, would do scans, mris, ultrasounds, and they would see nothing and they would say yeah, no, like no, it's probably not it, and if it is, it's not worth it because you have to get surgery to get a diagnosis. So you know, in the times between going to dozens of doctors, I just freaking, got through it Like I it's funny, I call it my white knuckle phase because that's how I felt Like I literally just felt like I would just go to work.
06:38
And you know, kick butt at my job, I cared deeply about the work I was doing. Kick butt at my job, I cared deeply about the work I was doing. But, yeah, over time it just got so bad that I just, yeah, I would come home and I would cry, or I'd cry in the shower before I got dressed in the morning and I just reached a point where I couldn't do it anymore.
Tim Reitsma
07:03
Let's unpack that a little bit. There's a couple things coming into my mind and you know one is advocacy. You know that's. I'm all about talking about self-advocacy and that, the importance of that. And it sounds like you advocated for yourself for years. When you first heard that word endometriosis and when you brought it back up with doctors and it was Dara used the word dismissed or just like, hey, you know, it's probably not that. How did that make you feel? You know you're going through this for years.
Katie Donlevie
07:37
Yeah, it almost. I mean it feels really gaslighting, sliding, and it's unfortunately something that many women, especially and especially with with conditions like endometriosis or adenomyosis or fibroids or PCOS things that are considered but aren't actually necessarily like women's problems really often get dismissed and it felt terrible. It felt like I had to keep fighting and keep being like no, I know, okay, I see that you're telling me this scan is fine and you didn't find anything, but I know there's something going on with me. I should not be in this much pain all the time and there were long stretches of time where I just got so burnt out on fighting for myself and trying to find help and trying to explain it.
08:37
You go to a new doctor and you have to tell them the whole story all over again. You have to take all your records. It's so energy draining and I would get burnt out on that for a while and I would kind of eschew going to any doctors for a minute and then I would be in total pain. So I would try again. It was terrible. I mean truly, truly, just felt like I know there's something and it turns out that I was right that whole time. But it felt so isolating. I felt like I was just kind of fighting by myself to get anyone to believe me.
Tim Reitsma
09:21
And somebody finally believed you. And what was that like?
Katie Donlevie
09:25
well, it's actually really funny because, um, they did and then they didn't, so I had a. So the reason I sort of shifted my whole life eventually is because I found a surgeon the only. So endometriosis is not curable, um, but you can get a surgery where it's called excision surgery, which is like the gold standard of care, where you can get a laparoscopic procedure where they move around all your organs. People think it's like, oh, it's just a laparoscopic, like minor surgery. Like no, they literally move all of your organs around and look everywhere and, if they're good at what they do, take out all the endometriosis lesions they find and then you can hopefully live after that for several years with a lot less pain. It's very likely that you'll have to have surgery again, but at least you have a better quality of life for several years. Anyway. So I found a surgeon who is a specialist and the first meeting I had with him it was like, oh my God, finally someone is listening to me. He just believed me. He was like yeah, yes, you have endometriosis, I can almost guarantee it. Are you interested in talking about medication? No, you know, I've gone through that whole rigmarole Like I really am ready for surgery. I had done my research up the wazoo Like I unfortunately know more at this point than most doctors about this disease, my wish to get surgery, and I was so thankful.
11:05
And then the day of surgery comes and I go under. You know, my, my parents are there, my partner's there. I'm so nervous. I'm a redhead and redheads tend to wake up under anesthesia. So I like had a whole like panic about that. Anyway, so I wake up from it, from under anesthesia like, and I look at the clock and it's like 30 to 40 minutes after I had gone into the operating room and my mom was there and I was like mom, like what happened? And she was like honey, like it's you know, and I was like mom, like I started to panic because I knew that something must have gone wrong, like they, they must not have found endometriosis if I was under for that short of a time.
12:00
So the doctor, the surgeon, basically says like yeah, no, you don't have it. You underwent this whole surgery, you don't have endometriosis. There were some spots that looked sort of, you know, angry. So I took some biopsies. But this is not what you're dealing with.
12:18
And, tim, I have never been in a worse I mean honestly, like depression, truly terrible spiral, than the probably like three, four days after that, because I had been waiting for so long to have a doctor. Believe me, listen to me, to get this surgery I had to take medical leave from work, I had to mentally prepare, you know, and then, and then to wake up and be told like nope, was the worst, freaking thing. And then, two weeks later, I had my post-op and the biopsies came back and they were positive for endometriosis, which means that I do have the disease. And what it also means is that the surgeon, even though he's supposed to be one of the best specialists, didn't realized that I had it, so therefore didn't take it out. So, after all of that, I had a huge surgery, I had all this mental stress and spiraling and then only to find out, yes, I actually was right this whole time. And it's still inside of me.
Tim Reitsma
13:28
Wow, okay, well, first off, thank you for trusting us with this story. That's an incredible emotional roller coaster. I'm trying to wrap my head around. You know, even the preparing for surgery, you know. I've had numerous surgeries and the mental stress, physical stress, the preparation, it's just. You know it's not a walk in the park, it is there's.
13:53
there's a lot that needs to go on just to get ready for surgery, to wake up, look at the time and go oh, that was short. And then to be told sorry, it's nothing. I can't imagine what you were going through.
Katie Donlevie
14:07
It was terrible.
Tim Reitsma
14:10
And how you know you get the results. It's positive. Now what? What do you do now?
Katie Donlevie
14:16
Yeah, I mean, that was a whole. Luckily, before I actually had my surgery, like I said, I had done a ton of research and so I actually did know that. It's a pretty common experience, unfortunately, for people with endometriosis to have surgery and to be told they don't have endometriosis and then only to find out later that they do. It's just they weren't with a surgeon who could identify it for whatever reason. So you know, there was a part of me that was like, okay, well, if he didn't find it, but I it's not anything else, I've been to every other doctor, right, like I'm pretty sure it's, it's this, then I'm gonna have to, like find someone else who will do this again. But that's such a daunting thing to think about after a major surgery.
15:07
So, you know, for a long time after that I kind of focused on just simply recovering. Like I had a couple months of medical leave from work. I was working with a health coach who I had met a couple months earlier, taking time to recover. I realized, like how deeply, deeply burnt out I had gotten through all the white knuckling I had been doing and I decided that I was not going to go back to work. I quit my job. Actually, it's funny, like two days before the 2020 pandemic, like everything shut down and I was like, oh, that's good timing. Everything shut down and I was like, oh, that's good timing. But in a way, it was good timing because I ended up taking like a full year to recover. It wasn't until a year later, after my first surgery, that I felt like myself again and I had totally lost myself in all of the pain and stress and mental taxation around this illness and trying to deal with it. And over the course of the year after my first surgery, I really found myself again.
Tim Reitsma
16:30
I've podcasted with many people now like, like yourself, and that seems to be a theme. It's. It's not uncommon where it's exhausting and not just exhausting to be living with something that is maybe out of remission or is in flare, or just exhaustion from that condition that we live with, but the exhaustion of fighting, fighting for our own health and advocating for our health and dealing with, as you said, being gaslit not being believed.
17:05
There's just so much stress and pressure just on that piece. And so, yeah, I hear you, I feel it. You know, quitting your job, just focusing on yourself, I can imagine was stressful in it in itself, like for me. I'm, I'm. I get an idea stuck in my head and then I just need to.
17:27
I act with urgency and my my wife and I talked about this recently and she's like slow down, tim, like I've got too many things on the go and and I just I need things to happen now. And so how was that just? I know you're active in your career, you've got your master's, you've building this career to shutting it down. How did, how did you know?
Katie Donlevie
17:48
It was so hard. Yeah, I'm. I live in Washington DC. I'm like super type A. I had gone to grad school and was working full time while going to grad school full time. Then I got this career in the nonprofit sector for a great national nonprofit organization and I was, like you know, just kicking butt. Yeah, it was unbelievably hard to just stop.
18:17
I had multiple phases of panic of like, oh my God, I am not contributing to society, what is my value? What am I even doing with my life? Why, what? Like just so many moments. And then, and then a while after that, I had kind of a new sense of panic around.
18:38
Ok, well, now what? Like, now that I feel recovered, what am I going? What do I want to do? Like I can't just sit around. Or I don't want to just sit around forever. So like I don't. Do I go back to school? Do I become an architect? Like I would be googling, you know career jobs, like just tell me what career I should have at you know, two in the morning, with like absolute panic in my heart. And so, yeah, it was really hard. The only way I was able to do it truly is because of my health coach, which is why I became a health coach, because she really helped me and sometimes, like, had to wrangle me, to keep slowing down, to keep remembering that what I was doing was actually work, was hard work, and was better for me and was better for everyone around me and everyone in my life and would end up being better for society.
19:46
For what I chose to do next, and I mean it was hard, we had a whole chose to do next, and I mean it was hard, we had a whole. There's a particular conversation we had earlier on where she had asked me, like what success meant to me. And you know, to me I was like, oh well, it means you know, progressing in my career, getting promoted, you know, being recognized as good at all these things. And she asked me is it possible that success could mean being a good partner, being a good friend, being a good daughter, sister? And I just immediately was like, no, those things are so important to me, they're essentially important to me, but that's not success, that's not what that means. And it was such a hard stop and it took honestly a very long time to, um, I don't know, like break down that mentality and then and then build it up to what it is now, um, which is much healthier for me.
Tim Reitsma
20:52
That resonates on every single level. You know, just building a career, rising up in organizations, and then all of a sudden it's gone. And after my last major surgery my doctor said take time. You know, take 8, 12, 16 weeks to heal. And it was week four. And I remember exactly where I was sitting in my house. It was on our patio and it hurt so much to sit up, but I had my laptop on my lap and I was looking at my labs because I felt I need.
Katie Donlevie
21:26
I need this and I didn't need it.
Tim Reitsma
21:30
You know we're fortunate enough to have a bit of savings. You know, my job ended so there was no health insurance or nothing, and so it was like I just felt that panic and then we threw it out to our friends and our neighbors and just hey, you know like we just need some support and not monetary support. But you know we're going through a lot and by just throwing it out there. The amount of support was incredible.
Katie Donlevie
21:56
That's awesome.
Tim Reitsma
21:57
Complete strangers reaching out. And so when you say that, just taking a moment for yourself, we live in this world that moves way too fast for us.
22:09
I don't think we're designed to move this fast. We're inundated with social media. We're inundated with all this stimuli that says we need to do more and we need to strive for that promotion, because if we don't, we're not succeeding. But I love that. What does success look like to you? And redefining that for yourself. And so here you are. Now. Right, you left that job, you had a health coach, you wrestled with all of this. You still have your diagnosis right Endometriosis doesn't go away. You didn't go for a second surgery.
Katie Donlevie
22:45
I did actually.
Tim Reitsma
22:46
Or did you go for a second surgery?
Katie Donlevie
22:48
Later on.
Tim Reitsma
22:48
You did Okay, and so you went for that second surgery. And here you are now, and how are you doing now?
Katie Donlevie
22:55
Yeah, yeah. So it's funny that cause my second surgery was actually only in October, so it was pretty recently, actually, and I'm I'm doing so much better, not just because of the surgery, because of the fact that I took the time that I needed to like fully and truly recover from not just the physical trauma of surgery the first time, but the like mental and emotional trauma, as you were saying, of fighting and hiding. And then I figured out that I wanted to be that person that my health coach had been for me for somebody else, like if there were somebody that I could help figure out that you know, here's what success looks like to me, or here's what I want from life, or I'm really struggling to balance this illness with my job, or you know, whatever it is. I wanted to be that person for somebody else, and so I took training to become a coach. I took training to become a coach and I started this business.
24:13
And it's funny because every now and again my type A self will try to poke its head out and be like you know, you got to do more Hustle culture. This is your business, you're an entrepreneur, you should be working 20 hours a day, blah, blah, blah. And I have to sort of like go back to my, my roots now, of like, whoa there. That's not what success is to me.
24:41
What success is to me is taking care of myself, listening to my body. So if it's, you know, a Wednesday morning and I'm supposed to have a call and I really need a nap, then I, I listen to that and I honor that. Um, which is very, very different than what I used to do. Um, and it's building this work and helping others while taking care of myself, while also being a good partner, a good sister, friend, etc. That is what success looks like to me. It's like that integrated version of myself, and I think part of the reason that I feel so good now and I was even able to undertake a second surgery was because I had done all that work to have that sort of foundation.
Tim Reitsma
25:41
That just highlights why coaches exist, like yourself, and some are blessed to have great friends who can ask those prodding questions, those big questions, those existential questions to get us thinking. And there's so much power in having a coach just to understand what's important. And you know that simple question if somebody's listening to this and is really struggling, it's sitting down and just even defining what does success look?
Katie Donlevie
26:12
like to you.
Tim Reitsma
26:13
I wrote a piece on self-advocacy recently and it starts with just writing down what matters most to you.
26:23
What are your values? Because that is going to help you inform the direction of your self-advocacy journey. Absolutely the direction of your self-advocacy journey. Absolutely, if you value curiosity or being heard, but maybe you don't. And so that's also going to inform how you're going to show up in your advocacy journey like yourself advocating for years, undergoing gaslighting, finding a doctor to believe you, to just go and undergo surgery to not believe you and then get proven wrong. Um, I'm curious, did you send that doctor a follow-up email and say I wanted to so much.
Katie Donlevie
27:00
No, I never did. I probably should. It's funny. The second doctor I went to um for my second surgery uh, is also in there in my area and he was like, why did you go to him first? I was like I don't know. So I've had a lot of laughs about it now, but not yeah.
Tim Reitsma
27:19
Yeah, that's, that's what we can do, right? We just look back and go well, I can't change that, I can't change what happened. But how does that now inform your advocacy journey and the work that you're doing?
Katie Donlevie
27:30
You know and sorry, you know what I was just thinking. I don't think I've really ever thought of it this way before. You just were talking, but in a way I think that if I had had my second surgeon first, I would have been much more likely to just sort of like go back to my life the way it had been, rather than like really needing to take that time to figure out everything, and so in a way, I guess I'm grateful for the way that that happened yeah, in a strange way when we look back and go okay, this journey, the journey you've been on and I've been on and others have been on, we look to where we are
Tim Reitsma
28:11
now? And would we be here? We don't know, but we can start questioning like would I be here, would you have started your coaching business and your podcast? Or would you have gone back to work in the nonprofit and just started working up that ladder of position? And for me, I wouldn't be here. If I wouldn't be here, um, at a visible condition, unless things happen the way they did.
28:42
Um, I just it was. I always had an idea of like, hey, I want to do some advocacy work in this space, but never would I no idea about starting a nonprofit andprofit and all that stuff, and so, um yeah, grateful is the word that you used, and you know the conditions we live with.
Katie Donlevie
28:58
And then yeah, it's weird, right but, and it takes a it's weird, right.
Tim Reitsma
29:02
This is like. This is the hand we've been dealt, and, um, you know, the phrase that keeps coming up in my mind is like so now, okay, right, I can't change that. I live with a few different things you can't change. You live with endometriosis, so what now? How are we going to approach and that's a fun and scary question to wrestle- with yeah, fun and scary are the two good words for it.
29:27
Yeah, I want to go back to endometriosis and I realized that we hadn't even defined it for our audience, and maybe we'll just go all the way back to defining it. And then I just have some curiosity questions around the stigma that surrounds endometriosis.
Katie Donlevie
29:45
Yeah, totally so okay, endometriosis is a disease where cells that are very similar to, but are distinctly different from, the cells that line the uterus grow outside of the uterus. It's a funny like I'm always so particular to say it exactly that way, because even doctors often get that wrong, get that wrong. So, for example, there's a lot of times where you'll hear from a doctor like oh, you could get a hysterectomy. Like no, actually, because the definition of endometriosis is that they grow outside of the uterus. So, anyways, that's why I'm very particular about it.
30:30
It is one of the 20 most painful conditions in the world. It affects one in 10, although the statistic is changing, I think to one in nine women around the world, and it's interesting to a couple of things. So many people think about it as like a women's issue because it has to do with the pelvis and the pelvic area. They've actually found surgeons and doctors and researchers have found endometriosis on every major organ of the body, so that includes the lungs, the heart, the brain, the liver. It is not just around the uterus and on the fallopian tubes, and, although it's very, very rare, endometriosis has also been found in people, biologically born male. So those are two important factors for me. To just make sure I say out loud because to your second question, a lot of the stigma is around oh, but that's your pelvis, that's your uterus. Don't talk about that. Nobody wants to hear about how people think it's just a painful period. It's not. It's a full body, full time, extremely painful and sometimes debilitating disease.
Tim Reitsma
31:55
I'm just sitting with that for a moment. You know, when you say, um, One of the top 20 most painful conditions out there, that is something that I hope our listeners just take to heart. When somebody says, hey, they live with endometriosis or they know someone who does, it's not just, as you said, a painful period or it's a women's issue.
Katie Donlevie
32:22
It is, it's serious, it's serious, yeah, it's serious.
Tim Reitsma
32:27
And yet there's still so much stigma, especially when it comes to women's health.
32:33
I heard something last week that just or the week before recording this I can't get into the details of it, but it was around women's health and a company had put out some content and a decent number of people unsubscribed, of a specific gender, and that just blew my mind. And so, when it comes to health, and if it's not just, oh, that's a women's health problem, I don't need to know about it. It's like, yes, we all need to know about it because that's how we're going to end the stigma. And so when you hear that, what comes to mind?
Katie Donlevie
33:12
Your anecdote you mean about the company? Yeah, it's not surprising at all.
33:16
It's so frustrating though I mean, okay, think about it. One in 10, or more likely one in nine women around the world deal with this disease and still the only way to get a diagnosis is to be cut open and have surgery. And still, often including me when you do have surgery, you're still told you don't have it. It's like, think about if you know. One in 10, I think that's. I might get the stat wrong, but I think it's similar to the number of women or women in America who have diabetes. You know it's a very common disease and the only way to get diagnosis through surgery. What Like? That's insane. That's ridiculous.
Tim Reitsma
34:08
That is. I've tried to wrap my head around it and, yeah, if a doctor said, yeah, the only way we could diagnose you is we're going to have to cut you open. You know, that's a lot. To even to process is okay. Well, do I just live with this? Or I can't imagine the thought of going through some people's mind of, well, like, why, like, don't they believe me? You know, what can we do here? And having to undergo a surgery. That's not just. You know, you're in and out, you have to take time off, work out. You have to take time off work.
34:41
And this is where you know I was reading a stat. You know one in four people in the US and now Canada I think Canada was one in five and I think they're changing that stat to now one in four live with a disability. And I don't like to say, you know, not every condition is a disability. It's a disease or illness or whatnot. And so when we look around, if you know more than four people, you know someone who's living with something and maybe they've chosen not to say Because of that fear, because of the shame that they maybe have undergone. Maybe that's the shame they feel themselves, or maybe the shame somebody else has imposed on them, or maybe the shame somebody else has imposed on them. It kind of breaks my heart but also gives me hope, like people like yourself who are just like no, we're going to talk about this and just like my seven-year-old daughter said hey, we're going to talk about this and we need to talk about this.
35:38
We got to talk about it, but there's other ways. I think we can end the stigma. I'm curious what comes to mind?
Katie Donlevie
35:43
Yeah, I was thinking about this a little bit and I think kind of two things come to my head, and one is more micro and one is more macro. The stigma is for us as people to start talking about chronic illness invisible conditions, as a systemic societal issue. So we as a society, in my opinion, are not good at knowing how to deal with people who don't get better. We expect people to get sick and then to get better, or we kind of understand cancer, something like that, that doesn't necessarily get better, but we really do not know how to handle. Like what do you mean? You know, five years later you're still dealing with the same thing. We just are so uncomfortable with that. I think we were talking on my podcast about how there's that like oh, are you better yet? Kind of question that someone with a chronic illness gets all the time and how sort of frustrating and tiring it is to kind of explain like well, no, not really it's much more complex than that. So I think starting to talk about this as like how do we in our society deal better with knowing and understanding that there are conditions that do not go away and someone might feel better or worse, might be in remission or in a flare at some time, but that's not the same as, like the black and white, you're sick, then you're better, because I think that would help us kind of take the burden off of individuals to do so much explaining and advocating and labor honestly, mental and emotional labor, to explain this to everyone in their lives.
37:53
So that's one thing, and then I think the second thing is more actually on the individual level, which you kind of mentioned earlier. I think it's like about self-awareness. You know a lot of people who come and work with me. Come and work with me because they're dealing with this chronic illness and they're really struggling to balance taking care of themselves with the other parts of their lives. So you know their jobs or their family or friendships, whatever that might look like.
38:27
And I think a huge part of ending stigma is to really think about where am I out of balance? Where in my life do I put on a mask and pretend that? Put on a mask and pretend that I don't feel as much pain as I actually do? Or who am I afraid to tell the truth to? Who do I worry that if they know this is what I'm dealing with, they'll treat me differently. And I think with that self-awareness comes the next question, which is what would balance look like, what would integration look like, and how would it look different than what I'm doing right now? And that's what I try to work with people on. So I think it's yeah, those two things one on a bigger societal level and one is more of an individual question, like how do I really want to live my life and how do I integrate this disease or this illness into my life, rather than siloing it away?
Tim Reitsma
39:42
Truth makes me uncomfortable. In a way. It makes me uncomfortable because you look at friends and family and for years I hid it. I hid the fact that I have Crohn's and that I would not participate in things, to the point where people just stopped inviting me to things, being, at the time, a new dad. We talked before we hit record about sleepless nights. You've got a new puppy and not comparing puppy and kids, but it's a lot of sleep in the first while.
Katie Donlevie
40:19
And living with a disease that has taken so much, you just put on that mask and hide it. It's funny because I think it seems easier in the moment and then maybe it often is easier in the moment, but it makes it so much harder in the long run.
Tim Reitsma
40:31
Yeah, yeah, my, my wife has often called me on that and saying, hey, why did you not tell them the truth, like why did you not tell them that you're, you know you can't participate, or you know you can't drink, or you can't eat this or whatever? It is because of this condition and honestly, it's sometimes it's just easier, um easier to say no um not tonight or I can't go out tonight.
40:56
I live with, uh, I'm, I'm anemic and can't get my iron levels up, and usually by Thursdays I just need to sleep. And trying to explain that to someone who doesn't understand, who has never understood that feeling of no energy, it's like, oh, I have no energy because I only slept four hours last night. It's like, oh, I slept 12 and I still have no energy. It's a lot of effort, but, like you said, katie, of your energy. It's a lot of effort, but like you said, katie it's you have to look inside, of going well, what matters?
41:28
You know, if you're struggling with this balance or struggling with this, how do you show up or how do you live with this condition. It's like what matters most, yeah.
Katie Donlevie
41:38
And I think it's also. You know it's not like you have to one day just decide okay, you know the mask is off and everyone can know every single thing. Like it's a process and I get it. I went through it myself. I used to hide a lot more than I do now. You know it's a lot of work to figure out. Okay, like who might it be comfortable to tell a little bit more about today, and then what's tomorrow? And then you know it's a process to get to the point where then, at the end, you're living like a fully true and integrated life, where you're not afraid to share what's going on with you and you're also not afraid to stand up for what that means you need.
Tim Reitsma
42:26
Yeah, understanding finding out what you need and practicing and so I've shared with people myself is practice it. Maybe it's with a partner or one of your close friends, or maybe it's in the mirror because you haven't shared. It's just practicing and understand. You know, maybe it's I don't know what I need, but I just feel I need to share this or, hey, I need this. And for those who are on the other end, who are listening to this, how do you want them to respond?
Katie Donlevie
42:56
You know it's funny because I was just going to, I was thinking like it's a self-reinforcing cycle in a good way, so meaning that, in my experience at least, every time I have shared a little more whether it's with someone I work with or someone I don't know at all or I love, a deep, dear loved one the response has always, 100% of the time, been kind and helpful to me, so that makes it easier to do it again the next day, right? Like I think the more to your point you practice, the more you kind of realize like, oh, the world is actually not going to fall apart if I need to just be who I am right now, and so I guess you know to people listening who would be on the receiving end of that. Like you know, think about what it might be like to share that kind of information with someone and how vulnerable that person is being, and I think inevitably your response will be lovely.
Tim Reitsma
44:06
Yeah, most people don't have ill intent and people might say something without thinking, and it's then your choice. If you've received something that's like, oh, that's questionable, it's our choice on how we're going to react. Is it just a gentle correction, is it? You know? All right, gloves are off. We're going to go at it now and I'm just going to tell you what I think. I don't always advocate for that response, but it's an opportunity to educate and even say, hey, that's not helpful. I was recording with somebody recently and he said if somebody he shares some with somebody, what he lives with, and the response starts with at least he knows it's not going to be.
Katie Donlevie
44:50
That's such a good point but he uses.
Tim Reitsma
44:52
he uses that as an opportunity to then, um, gently correct and say you know, that's not helpful to me because my normal and this is my words now is my normal is different than your normal and different to somebody else's normal. So I live with Crohn's disease and it's very different than other people I know who live with Crohn's disease. They you can't compare. You know, endometriosis might be different for you than somebody else and we can't compare and I think that's a problem we have with in our circles and in our society is like oh, you hear it. It's like oh, you have arthritis, oh, your joint must be sore.
45:29
Well, that's not the case for everyone, so it's that approach of curiosity. But for someone who is listening and who needs and just feels that they need some support or need to get something off their mind, or maybe considering a coach, I'm curious if there's a couple of common themes that you've seen within your coaching clients that might help somebody else who's going through that journey.
Katie Donlevie
45:57
Yeah, absolutely. I mean, I think, which is the whole point of your podcast. Communicating is really difficult. I was talking to someone a couple of months ago who said you know? I said, obviously we can't get rid of your condition, but if we could wave a magic wand, what would you want? And she said all I really want is to be able to explain to people whom I love how difficult this is and for them to understand, and to me that's so powerful. She wasn't saying I don't want to be in pain. She wasn't saying I don't want to have to miss work. You know, I just want people to understand me and to hear me, and that's something that can be really challenging.
Tim Reitsma
46:52
That's powerful and challenging, as you said, because I was writing a note is how do we help people understand? And so it's almost that cycle right Of. Well, I don't want to share because I don't know if they trust, or I don't know if I can, but I want them to understand, but they'll never understand if I don't share. And so you get into that cycle and I think that ties right back into our earlier part of the conversation is understand what's valuable to you and important.
Katie Donlevie
47:22
Yeah, and you know sort of exactly to that point. I think it's one thing that I think is sometimes difficult but also really powerful to continue to remember as someone who lives with chronic illness, is that it's not a static thing, right Like it's a constantly evolving process. So, you know, one month I might be feeling like I have the energy to do that gentle correction that you were just talking about the person you spoke to does, and you know, the next month I might be in a pain flare and I might decide actually it's more valuable to me right now to protect my energy and so I'm not going to do that. It's not like a black and white like when someone says X, I say Y. It's a really continuous process to check in with yourself and like notice what you need and listen to yourself and then decide like how much am I going to let people in or how much am I willing to share right now, today? You know it's something that's constantly evolving and iterating.
Tim Reitsma
48:39
The question that one of the questions I'd like to wrap up with is around self-advocacy, and I feel like we've talked a lot about it. I think this, your expertise as a coach, has really come out in really starting to, starting at that personal space, like you said, that micro and that macro piece. It's not a linear process, it's not just black and white. It's not like I live with a chronic condition and I'm now going to tell everyone um, or I might not tell anyone it's. There's so many nuances to it.
Katie Donlevie
49:12
Yeah, it's funny because, uh, you know, as you probably have have learned starting a business. You start a business to do the work that you are passionate about, right, which for me is coaching. Then there's all the other aspects like I'm somehow now an accountant and marketing, and the marketing piece I really struggle with because everybody is always like, well, what's your takeaway? What can people take away when they work with you? What problem are you solving? And I really react badly to that because of what you just said. It's different for everybody, like everybody living with a chronic illness. Yes, there are common themes. Absolutely, we all deal with a lot of similar experience, but my version of balance and integration and and discover what that is for ourselves, and then it's my passion to help people figure out what that looks like and then how to do it.
Tim Reitsma
50:33
That's where it starts. We could go to social media and read any business book you and I share this. Maybe love this.
Katie Donlevie
50:43
Uh, maybe love hate, hate, hate, hate, hate.
Tim Reitsma
50:52
It's uh, I love it. You know, uh, yeah, I look at outsource my own. It's um it just. You know you're talking about sucking energy out of me and it does, and but yeah, it's, it's.
51:06
I just want to do the work. I don't want to be, I don't want to be, I don't want to be all those other things. But you know, katie, as we wrap up, you know I want to end just on a note of encouragement for our listeners, somebody who maybe living with something that is invisible, a chronic illness or disease or disability. What do you want to end off with? What's, what do you want to share with them?
Katie Donlevie
51:27
I think I just want to share that I don't know, like in my experience and in the experience of people I work with and also every single person I've talked to in my own podcast, the more and the more you fight for you, the more others fight for you. And it's so scary, it can feel so vulnerable and, no, our society is not set up for it. But there's a way, there's a path to really think about what that looks like for you and and I think you'll be pleasantly surprised, um, by the reactions you get back for the most part, I love it.
Tim Reitsma
52:14
That's a good place to to wrap up, uh, this, this great conversation. I learned a lot. Um, I went into the conversation knowing a little bit about endometriosis not a lot and you've helped open my eyes and my world to this painful condition that so many people live with, and so thanks, thank you for that. Where can people?
Katie Donlevie
52:34
reach you Well. Thank you for listening and thank you for letting me share. I really appreciate it. Yeah, so people can listen to my podcast. It's called my Chronic Illness and Me. It's on every major streaming site and I have an amazing episode with Tim. That's a great starting point. They can also find me on my website, it's reviveandthrivecoachcom, or email me at katie at reviveandthrivecoachcom, or on Instagram, which is reviveandthrivecoaching.
Tim Reitsma
53:02
I love it. And for those who are listening, if you're like, oh, I missed that, don't worry, head to the episode page. We'll have all the links there as well. On the Invisible Condition website and for those who are listening, what helps us end the stigma of invisible conditions is by sharing out these episodes. If you like what you heard, if you have more questions, share it with your friends, your family, your colleagues, strangers, or drop it to someone.
53:32
I don't know what you got to do, but this episode here, as well as any episode on Katie's show as well, that's what we're going to end this with. We're going to keep talking about our conditions because we want to create a place where we don't feel like we need to hide. If we don't want to hide, we feel trusted and seen. So the way you can help support Invisible Condition is to subscribe to the newsletter and, if you have the means, consider donating. The donations go directly to support the publication, the editing, everything to get episodes like this off the ground. So for those who have supported, thank you so much and I hope everyone has a great day. Thanks again, katie, for joining us.
