Pt. 2: A History Of Medical Racism and Its Part In Current Endometriosis Treatment for Those of Color: Kimether’s Story

Speaker 1:
0:02

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery.

Speaker 1:
0:41

Today is part two of our episode with Kimetha Redman, and this is where we left off.

Speaker 1:
0:48

I went in to see a PA for a urology clinic and it gave me a snippet of kind of what you're talking about, because I walk in and she says to me well, your ultrasounds are probably inconclusive, they're oftentimes wrong and stones aren't really as big in there as the ultrasound is made to seem, and sometimes you don't have stones, even if the ultrasound says that you have stones. She never palpitated anything on me, she never looked at me, she barely acknowledged me, even though I have a history of stones. So this is a lot of what I feel like you go through to jump through hoops to just have someone listen to you and believe you. And we, as endometriosis patients, already experience this to a heightened level. Women typically experience this to a heightened level and all those layers. So when we're communicating to these practitioners, how do we communicate and I don't want to say demand, because that can have a negative connotation but how do we set the tone of respect and expectation as a patient walking into a provider?

Speaker 2:
2:11

The fact that you had a history of kidney stones. You had documentation, you had I'm sure consultation notes previous visits with other providers and they were that dismissive. Those are the ones that I'm like. I can't waste my energy on you?

Speaker 1:
2:22

Nope, I'm not going back to her.

Speaker 2:
2:23

No, because, even though I'm always giving people can't waste my energy on you. Nope, I'm not going back to her. No, because even though I'm always giving people different insight on, like, how to prepare for your visit, you know, certainly you can help set the tone by coming in with your symptom tracking. You know, I try to do a one page summary of, like the chief complaint kind of your history or present illness, like what's going on with you, how the pain is impacting your life, things like that. You can come in with all of that. You can come in with your imaging reports and everything.

Speaker 2:
2:53

If you're dealing with someone who really just has not valued the importance of listening to the patient, I tell people to choose your battles because it's not likely that you'll get very far with that person. Certainly, a few times I have encountered someone like that. They're not listening, they've already kind of in their head, have already decided what's going on. Yeah, I'll ask them to explain their process for coming up with that diagnosis and to share their differential diagnoses, because that at least and you can say that as lightly or bubbly as you like you- know to ensure that it's not coming across in a questioning type of way.

Speaker 2:
3:38

It's like I do it in an inquisitive way. I'm like, oh okay, oh, that's interesting. Can you tell me what about my history and your physical exam that led you to that diagnosis and what your differential diagnoses are? Because that cues to them, if they don't have differential diagnoses, that their diagnostic process is not done yet, Because a true diagnostic process requires a adequate history, which means listening to you and asking the right question.

Speaker 2:
4:08

That's 90% right there. A physical exam. You said that they didn't even touch you, so they didn't even have a physical exam data to work from and then coming up with differential diagnoses. So you have a top diagnosis.

Speaker 2:
4:22

In this case they thought you probably don't have kidney stones at all. And but what was their second and third differential diagnosis? Because you aren't supposed to just have one physician, assistant, nurse, practitioner. We're all taught to make sure that you have other differential diagnoses in mind, because that way, when you start going down the route of your one diagnosis that you think it is in this case nothing, what happens when you end up in an emergency room with kidney stones? You didn't even start any of the work to figure out if maybe it's something else, one of your differential diagnoses.

Speaker 2:
5:06

So that at least gives them pause. Yep, and they could decide to confirm that they're a jerk and say I don't have to, I don't have to show you, I don't have to explain myself, and that that gives you the confirmation to be like oh well, I'm looking for, I'm looking for a provider who's a partner. I need someone who's actually going to partner with me with my healthcare and not just draw baseless conclusions. So I guess our time here is over. And then I go to the front desk person and ask for my copay back.

Speaker 1:
5:40

You do See, I should have. I told okay. So I literally walked out. So, dr LaRiche, I asked him a few questions about it and he, he had called me about it too because my creatinine numbers were my base is really high, which indicates other things, right, so I call him and tell him about it. He goes, you walk back in there and you tell him to go, you go talk to a doctor and I was like, but I can't do anything till I get the CT scan, like then I have everything, but I never once thought to ask to get my copay back.

Speaker 2:
6:12

I never once even thought of that. Yeah, if they didn't render the service, because that's the whole point, right, right, payment is expected at time of service rendered. If the service wasn't rendered and I'm not saying the service means that you had to walk out with a diagnosis If they literally just sat down and just was like, yeah, no, no, no, there's nothing wrong with you. Blah, blah, blah and didn't do any due diligence, that's to me worth being billable, right, it's worth asking Ew, we should set that standard because it is a service.

Speaker 1:
6:47

we are paying for it. We shouldn't just pay them for not doing work right you blow my mind. You blow my mind, I just need more of you.

Speaker 2:
7:05

Yeah, but just to get back, only because I thought of something else, that we didn't talk about the Black experience with endometriosis specifically. I know I mentioned just historically, just as a country, the role of Black bodies within the healthcare system is awful. It's evil, to be honest. There is no nice way to put it. There's no politically correct way to put it. It was awful. We would certainly treat it with the same, if not worse, as you would test animals. So that is heavy. And the fact that fields of medicine, especially gynecology that is their foundation is already problematic. So we're already dealing with a very problematic system. But with endometriosis it wasn't immune to the scientific racism that was being perpetuated with other diseases too. So it didn't take long after the doctor's name is Vincent Miggs, it didn't take long for him in his practice to see like, oh, it seems like my white patients who are like well-to-do, you know, basically my private patients, the ones who had the money to pay privately, they're the ones to get endometriosis. He wasn't even focusing on race per se.

Speaker 2:
8:21

He really was just like, oh you know, endo really seems to just secure most frequently amongst, like my, private patients versus, like my, public hospital ward patients. But at that time and I mean we're talking about like the 30s now, right at that time it was pretty highly influenced by socioeconomic status and racial inequity. If you were a public hospital ward patient versus a private patient, so being a private patient was synonymous with being white and being middle to upper class, maybe being a career person. You know your household had a career and maybe you wanted to hold off childbearing so that you could finish school first and get into your career and then you can go ahead and start having children.

Speaker 2:
9:09

Racism embedded within the literature for physicians to just say, oh well, if private patients and white patients are the ones who are getting endometriosis, then it must be unlikely to happen in non-white patients, especially if they are also poor. So that's how it became a white woman's disease. So for a long time it was a white career woman's disease. And we know that because even now we encounter physicians who can get the definition right of endometriosis and are dealing with like outdated information.

Speaker 2:
10:02

So, unfortunately, there were still textbooks saying how this was a white women's disease, like even just within the last 20 years. Wow. I didn't know, I'd know that, because, for you know, a lot of times like medical textbooks will kind of outline the patient profile that you can expect in someone who has this disease.

Speaker 2:
10:23

You can expect in someone who has this disease and it was described as like a white woman you know, middle to upper class but no explanation behind it. It's really irresponsible of textbooks and literature to like outline like, oh, this seems to be the patient profile, with no context behind it. Like that context, for example, could be patients who can afford to see a doctor privately, who has, who has the specialized training to diagnose endometriosis, are more likely to get diagnosed with endometriosis. It's like a no brainer and my husband, who is not a scientist or a clinician it took him five seconds to come to that conclusion that, oh well, wouldn't it appear to be a white woman's disease, just a white, you know, white, middle to upper class woman disease, simply because they had the means to be able to get diagnosed.

Speaker 2:
11:17

Or they were more likely to be taken seriously. I'm like, absolutely Now, if I could just get the rest of society to pick up on that, that'd be great.

Speaker 1:
11:27

It's interesting too, though, because internally, we have obviously the same parts and everything else Like why Right?

Speaker 2:
11:35

However, there are scientific differences between white women and women of color in their risk factors yeah, the risk factors and, even more importantly, their lived experience, like how they interact with the health care system, how they're treated as they go through the health care system. That is a large perpetrator of poor health outcomes is how you're treated when you interact with the healthcare system. And those risk factors certainly are very, they're very important. But even those, I really try to have an understanding of what's behind those.

Speaker 2:
12:19

I remember sitting in one of my nursing school classes and the professor, you know pretty flippantly and this isn't the first time that it happened in school, because I remember sitting in one of my nursing school classes and the professor, you know pretty flippantly and this isn't the first time that it happened in school, because I remember it happening in my public health program too, where it was just real flippantly noted that a risk factor for HIV is being Black.

Speaker 2:
12:39

And you know, wow, she mentioned another one I think it was one of your chronic illnesses, can't remember which one, but she just, very matter of fact, actually just said risk factors being Black and then just moved on and I remember I was like, hey, can we take a moment to mention why that this classroom of future clinicians is going to believe that just my inherent blackness is just going to automatically mean that I'm just more prone to certain things, and that's it. There's no contents behind that, like my access to care or how I'm treated within the healthcare system, or my ability to afford my medications or my care in general.

Speaker 2:
13:24

Yeah, even down to like employment and like my ability to be able to have a job that provides excellent benefits or not, you know and they just brushed it off and I walked out. I was like no, can't have this. This is not cool. Because now, because this is why you have clinicians who just go out into the world and just think that black and brown people are just inherently broken. You're just inherently going to have bad health outcomes simply because you're black, when it's way more complex than that.

Speaker 1:
13:53

Yeah, and we already feel broken. That's the thing that I was talking to another endometriosis person and she was telling I just felt broken, you know, I just I had to have a hysterectomy because I was misinformed and I just felt broken and I felt less than as a woman, but no one explained why. No one backed that up with evidence, no one backed that up with. This is not because of you, this is what it is and this is you know. And I think that we carry so up with this is not because of you. This is what it is and this is you know. And and I think that we carry so much guilt, so much information, because no one says why. So if the textbooks are saying because you're black, because you're white, but why?

Speaker 2:
14:37

why, Like I, it is not just because I'm black that I have a higher rate of open versus minimally invasive surgery gyne surgery like hysterectomies, oophorectomies.

Speaker 2:
14:50

It isn't just because I'm black that I'm more likely that I'm going to have a hysterectomy or oophorectomy at a younger age. It isn't just because I'm black that I'm more likely to have surgical complications, diagnostic delays, years of progressive suffering, more likely to have adverse reactions to treatments. No, it's so much deeper than that. It's not just because of being Black that all of this is your fault, because it is the medical system, it is racism, scientific racism, it's implicit bias, it's the medical distrust and the normalization of our symptoms that we inflict on ourselves, absolutely Simply because we realize that we do not have pleasant experiences when we interact with the health care system. It's us not following up with appointments because we're terrified and don't feel valued by the provider. Following up with appointments because we're terrified and don't feel valued by the provider, or we would maybe gaslit or talked down to, or made to feel small, or made to feel like we were just a uterus Right, or, when we went to our providers, that were less likely to seek care, less likely to follow up with appointments, like there's just so much more to it. I think the reduced quality of care, though, and the access to, the lack of access to specialized care is probably the biggest factors and justice me anecdotally. That is the biggest thing. I think if we had the exact awesome quality of care as everyone else, with excellent quality of care, that these poor outcomes issues would start to go away.

Speaker 2:
16:22

And then in the research, so the fact that, for multiple reasons, black women have less access to surgical diagnosis, that's the reason why we're also less represented in research too, because if the research studies are only including individuals with surgically confirmed endometriosis, it eliminates anyone who has not had surgically confirmed endometriosis. It eliminates all the people who literally go decades, like me, with symptoms, who didn't get a diagnosis until they were almost 40, or that's if they ever get one at all. It eliminates those who will never be able to afford a out-of-pocket endometriosis specialist right, who has the best eyes and the best skill to be able to identify and remove all of the endometriosis. You know, yeah, so even that has some huge repercussions, like just us not being represented adequately in the research.

Speaker 2:
17:24

It's heartbreaking to me which is why I also advocate on just like more representation in research and I don't mean like just the research to keep repackaging the same GnRH drugs or birth control pills like actual research that's talking about not only the lived experience of a more diverse group of people with endometriosis, but also the outcomes of having a well done incision Like. We need to see more of that in the research and it needs to be from a diverse group, and that's going to have to take more than just including women of color, but it's going to mean including LGBTQIA plus non-binary. We need more of us. We need more of our stories and more of our data being shared within the literature from a specific geographical area.

Speaker 1:
18:21

I think that can also create a bias right, like here is very different than where you live because culturally it's different here than it is there, and economics play a big part in that. And so taking it from every walk of life and understanding background, understanding hardships, understanding all of it is so important to having a well-rounded research, not just geographic, specific or anything else, and we need that to really understand it Absolutely.

Speaker 2:
18:54

Yeah, absolutely, and we need more. We obviously need more endometriosis education, not only in the general public but especially amongst our clinicians, but we need also the historical context of the Black experience, both in general throughout the healthcare system and within endometriosis. I love telling people about Dr Donald Chapman. He's an African-American gynecologist out of Chicago even though he wasn't the only one he really like doubled down and and really like laser focused on criticizing the racial bias and endometriosis diagnosis. And this was in the seventies and you know. So endometriosis was able to go several decades as just being this white woman disease before Dr Chapman really put it out there mainstream and really challenged his peers by not only criticizing them about the racial bias but actually conducting his own studies, because the majority of his patients unlike Dr Miggs, majority of his patients were black. You know, because he was in Chicago after all and he found that the incidence of endometriosis was quite comparable between Black women and white women.

Speaker 2:
20:08

But he also published research that showed how Black women were more likely to be diagnosed with pelvic inflammatory disease, which is a complication of STDs, versus endometriosis. And then one of his studies found that 40% of his Black private patients key private, his Black private patients. They had surgically confirmed endometriosis but 40% of them were first inappropriately diagnosed with pelvic inflammatory disease. Interesting, we are literally being given antibiotics without them doing any type of urine test, blood test anything. They would just write out antibiotics and say so urine test, blood test anything. They would just write out, write out antibiotics and say, take this and you know, I think you have an STD, without asking you any questions about if you're even sexually active.

Speaker 1:
20:48

Which is the first thing they ask us when we go in there.

Speaker 2:
20:50

So yeah, and that's that's still happening today. Still still is happening today, that's insane.

Speaker 1:
21:02

This is why it's so good to talk about this, though, and this is why I love your perspective, because you come with so much knowledge and you come with a base to that knowledge. It's not incomplete knowledge, if that makes sense. Oh gosh, it always feels incomplete and I'm like In Demetriosis.

Speaker 1:
21:15

knowledge is really incomplete in general, only because we're still doing so much research on it. But you are just so knowledgeable about this and I appreciate it, because it forces me outside of my little bubble to look at the bigger picture. And if we don't look at the bigger picture, we can't have better care for everyone.

Speaker 2:
21:34

I swear I'm just going to die on that hill of saying that in my professional and personal opinion. In my professional and personal opinion, it is not until we ensure that endometriosis care is greatly improved for the most marginalized that we as a whole will be able to get very far if we're not ensuring that the most marginalized are not being brought along and brought to the table. I think that's why I see organizations like Endo Black, for example, point we're like well, let's combine efforts because the work needs to be done and improvements need to be made. And I just want all of the endometriosis community, especially as advocates, to really hone in on addressing the discrepancies in care for the marginalized population. Because it's awful, we have a general idea of how prevalent endometriosis is, but really we don't, because there's countless non-binary, LGBTQIA, low income like those who just never get access to the care necessary to diagnose their endometriosis. They remain countless. When I say one in 10 women, it's really not one in 10.

Speaker 1:
23:04

It's like one in six or seven maybe.

Speaker 2:
23:08

Maybe and I always add on in countless numbers of non-binary, lgbt, low income and others who just are not being viewed as belonging in this group. Yeah, you know when we need to be ensuring that they get the quality care necessary to to ensure that they can get diagnosed and properly treated.

Speaker 1:
23:33

Yeah, it's kind of like that you know when we're in a relay for endometriosis right For proper care diagnosis you're only as good as the slowest person in the race. Yes, yeah, you're, only you will not win this race of advocacy and better care if you don't work as a team to build it to go faster. If you don't include the middle, the end, the wherever. You have to all go at an expedited pace, but you have to do it together and work together.

Speaker 2:
24:03

Have to do it together.

Speaker 1:
24:04

And I think that's been so enlightening for me to experience that because, like I said, I can be stuck in a bubble over here.

Speaker 1:
24:13

But if we're not made aware of the fact that there are other people with other challenges and other struggles, and if we don't work on that together and hear each other and say, yeah, this isn't okay, we really need to work better at this as a whole, then we're just going to be stuck in this standstill, much like a lot of the medical system and endometriosis education, because they don't look outside of their bubble and what they know. Because it's uncomfortable at times right, it's uncomfortable for a practitioner sometimes to have to look outside of what they already know and how and to look outside of how to treat certain demographics of people across the board. It can be uncomfortable. It's not what they know, it's not what they learn, but we have to to get better. That's how we grow and to have that expectation walking into the exam room I think is important, and maybe do we step into the exam room saying, hey, I'm looking for a doctor to partner with me, I'm looking for a practitioner to partner with me.

Speaker 2:
25:14

I do.

Speaker 1:
25:15

Yeah.

Speaker 2:
25:15

That's what I like to do, at least with a new provider, Because it's an interview anyway to me. When it's a new provider, you're deciding whether someone you're going to even stick with is even worth your time. Right, and the way they present themselves in that initial interview is going to determine if you're going to hire them.

Speaker 1:
25:33

It's like a dating app of sorts. If you really think about it, they're going to know a whole lot about you. It's real intimate, so they're gonna know a whole lot about you.

Speaker 2:
25:44

it's real intimate, so you might as well, vet them first, exactly, exactly, exactly, you know. So I try to tell people. I try to come in with that mindset because unfortunately, a lot of us that's and we can blame, unfortunately, our a lot of our past experience with providers. We go into appointments fearful, we feel small, we feel completely at the mercy of the provider, and it shouldn't be that way, it really shouldn't. You are very important. In fact you are just the center of this. That's the whole point of patient-centered care and if a provider is not understanding that or does not fit within that, then they got shortcomings that they need to address. But you hopefully can go elsewhere.

Speaker 2:
26:32

Hey, I've been dealing with a lot, as you can see, in my history. It's fairly extensive and I'm looking for a provider that can do X. I really try to narrow it down because I don't need them to be my end all be all. I'm not looking for a savior here. I'm not looking for someone that I could go to for everything. I try to just say, hey, this corner of my health I could use someone who could help me with that. So that's what I'm looking for and I do try to like that one pager summary.

Speaker 2:
27:09

Like I said, I try to bring that to all my appointments. And the beginning and end of that one pager says exactly what I'm here for and what I wish to leave with. Ooh, that's good. So if I come in, and yeah, I want you to look at my history and I want you to listen to me, but I like to let them know right up front that I'm looking for a referral to pain management. For example, I'm looking to try a different formulation of vaginal suppository because the one that I'm using is not effective anymore, because clinicians can work with that. They're like OK, I can handle that, that's within my purview, it's targeted. I can knock that out for you within this visit. I like to give them an opportunity to be able to have an easy go in too.

Speaker 1:
27:54

Yeah.

Speaker 2:
27:56

Narrow it down yeah.

Speaker 1:
27:58

Mm-hmm, and I think too, like if you come in with that, it gives them little room to wiggle outside of listening to you. Maybe I'm wrong in that, but I think that you're very good at communicating ways that we can walk in, and we should all feel empowered to do that. It doesn't matter who you are, where you come from, the color of your skin, your sexual orientation, your religious beliefs it does not matter. Your sexual orientation, your religious beliefs, it does not matter. You should all feel empowered to walk in there with these very direct yet simplistic ways of communicating to your practitioner.

Speaker 1:
28:36

And if they aren't on board with that, then I think it's time to use your feet and say I don't know if we're on the same page, Thank you for your time and walk out the door and try to get what it is that you still need.

Speaker 2:
28:51

I've seen providers that I'm like, wow, this was not a good visit. But so towards the end I'm like, well, let's see if there's anything on my little checklist here that I could at least have them do. Um, oh, yeah, I saw. I'm like, okay, are you able to refer me to another provider? Maybe I need a actual documented referral. I probably already most likely already know who I want you to refer me to. Right, so I can say could you write me a referral to go see this clinician specifically? Yeah, you know again, and see if, if I can at least get that like, I try to get something out of it, especially if you're paying for this time and and it's not just the monetary paying but it's also paying for it physically, emotionally, mentally, like to get yourself to this appointment and everything so I try to at least see what I can get out of those appointments. But sometimes, if it's really like crashing and burning, I'm like let me just get the heck out of here, I ain't got time for this.

Speaker 1:
29:52

It's really, you know, it's interesting. Like you know, endometriosis statistics are they say one in 10 and really like good doctor's appointments, are like one in 10. That's the reality.

Speaker 2:
30:06

Yeah, until you get like a team of providers together where you are like, okay, I finally have folks that I feel comfortable with. None of you move, don't change practices, don't go anywhere.

Speaker 2:
30:19

Yes, but it can take time. I mean, just as an example, it's taken me almost two years to get a multidisciplinary team and it's not like they work together, because, even though that would be amazing if they did, they don't, because our healthcare system just doesn't really lend itself nicely to that. But I at least have five providers that I'm like okay, I feel comfortable with these five providers. They know me well, they treat me well, they listen. This is who I can move forward with so that I can stop having the hit or miss. But I can't tell you how many providers I had to see before I finally got to these providers.

Speaker 1:
30:56

But it does make you feel very unseen. Exactly.

Speaker 2:
31:02

And it's exhausting it is and.

Speaker 2:
31:04

I go through periods of provider fatigue where I'm like I just can't see anybody for a while, even if I'm feeling not my best. I'm like you know what, I just kind of need to live life for a little bit because I have to recharge my battery to be able to even prepare for another visit with a new provider and be able to manage however that visit goes Right and and whatever repercussions of that visit, and and that's okay, that's okay. You know, that's self-care. Honestly, it is To say you know what. I need a break. This is exhausting work. I'm going to give myself a week, a month, three months, whatever, and then I'll pick back up when I'm feeling more up to it, because I really try to show up as fully as I can to my visits. But you can only do the best you can when you're dealing with chronic illness.

Speaker 1:
31:55

Yep, and a doctor should be able to meet you where you're at too. Absolutely yeah, any practitioner, honestly.

Speaker 2:
32:02

Yeah, every practitioner and we're supposed to. But it gets exhausting when you feel like you have to be dressed up and makeup on and questions ready and your documentation ready and to show like I am a informed patient. I am someone that you cannot just dismiss and it's going to fly. I am someone that you cannot just dismiss and it's going to fly. I need you to not only listen, but I need you to actually do the critical skills, the critical thinking that you were trained to do, to be able to help me with my health issue.

Speaker 1:
32:36

It's a lot to bring that to the table, yeah it is, but you're doing an amazing job, not only as a practitioner, understanding that, you're doing an amazing job as an advocate, and I just think if we had a significant amount of Kimethers in the world, it would be so much better, because you have such a great way of perspective and I love that.

Speaker 2:
33:02

I mean I don't think I was a jerk before chronic illness, but I do feel like I've always been passionate about serving the underserved. That is clear. And I think my upbringing as a Black woman, seeing the women in my family, how they were treated, the sacrifices that they had to make literally sacrifices to their health even in order to just keep food on the table, keep the lights on and keep us fed the dismissal that they've experienced, the ultimately unnecessary hysterectomies, the fear of questioning physicians I mean I grew up seeing all that and really taking all that in and I feel like I recognized really early that not only was the health care system broken but it was particularly shattered when it came to women of color. I feel like even as a child, I saw that pretty early on and I wanted to be a part of fixing that. That's amazing.

Speaker 1:
34:01

And you're doing a great job.

Speaker 2:
34:03

Going through chronic illness has added a whole different level. When I see someone and I'm listening to their story, I've experienced the dismissal, the gaslighting, the ignorant. Personally, I have had to deal with the medical repercussions of the ignorance of providers. Going back to the beginning of our conversation, when I was seeking fertility treatment, what I should have been told is that endometriosis excision by an expert specialist is probably your best bet at improving your fertility. So you should do that first and then perhaps, if necessary, move on to fertility treatment. But instead, because of the ignorance of providers, I was told oh yeah, could be endometriosis.

Speaker 2:
34:50

but it's fine, you can get pregnant with it, it's okay, and because I'm dealing with a chronic illness where there is a lot of ignorance, like, just like lack of knowledge. What falls into that gap of knowledge is bias. So I unfortunately think that the way I treat patients is largely informed by the negative experiences that I've had and the negative experiences that I've observed. I wish it wasn't that way. I wish that I was just good, old, young chemist that just was like I'm going to do this right as a clinician and it's not going to have to come out of a place of harm Right, but unfortunately it has. I will always take my patients seriously. I will always honor their pain. When they say 10 out of 10 pain, I believe 10 out of 10 pain. I believe 10 out of 10 pain. When they open up to me about something that I know was painful, like a past trauma, I'm going to always honor the courage that it took for them to do that because I didn't have that.

Speaker 2:
35:58

So this is my way of providing what I didn't have, what my mother didn't have fully, what my grandmother didn't have, what my mother didn't have fully, what my grandmother didn't have, what my enslaved ancestors absolutely didn't have. I'm going to treat you as a human. I'm going to treat you as a child of God. I'm going to treat you with the respect and the dignity that I would give a family member. Yeah, yeah, like. So. It's what I wish all clinicians did.

Speaker 2:
36:27

I will say that the vast majority want to, right, but we're within a health care system that really just doesn't lend itself to that. I'm often taking work home, I'm charting, I'm staying at work late and I'm OK with that, right, right, because this is the choice that I've made and when I decided that I wanted to be a clinician that's going to actually do this the way that I think it has to be done. This is what it includes, and so I wish we could all direct our careers in a way that we can provide care exactly in the way that we envisioned when we envisioned ourselves becoming clinicians, can provide care exactly in the way that we envisioned when we envisioned ourselves becoming clinicians. But unfortunately, a lot, don't? You have a lot of unhappy clinicians unfortunately for that reason.

Speaker 2:
37:12

But that's no excuse for ignorance, no excuse for dismissal, it's no excuse for not staying on top of the literature, it's no excuse for saying, huh, I don't know that, let me go and look that up. That's okay. That's okay.

Speaker 1:
37:27

I would rather a clinician tell me they don't know than give me a falsified answer that makes me chase a diagnosis or chase care or chase getting better of any sort. I would much rather honesty every time every time, every time now.

Speaker 2:
37:48

So I will continue to encourage clinicians to do that. The same amount of energy I put into trying to help people who are patients you know going in to see clinicians, I really try to to use a lot of energy also with clinicians too to help them recognize, like, what are some ways that you can recognize the humanity in your patient? That's not going to throw off your whole schedule, like get you in trouble or anything Like what can you do and find those opportunities and don't just give up and just decide to just be?

Speaker 1:
38:22

part of the exactly. Don't accept mediocrity of yourself professionally, no because you'll find more joy and a better outcome than mediocrity.

Speaker 2:
38:32

Yeah, yeah, yeah.

Speaker 1:
38:34

You will. Kimather, thank you so much for your time and your wisdom, and just taking the bull by the horns that's what we say out here is the bull by the horns because it's, you know, mostly country. You are doing an amazing job and you have given and empowered people to get better care while giving better care, and that is when we talk about gold standard. That is gold standard is when we talk about gold standard. That is gold standard. And you are living that life of gold standard in a place where it has not been gold standard for you, but you're taking it and you are making it better for others and you are a battery charger for so many people not just your patients, but for those listening today and for those that you encounter in your advocacy work, and so thank you so much for doing that. You're amazing.

Speaker 2:
39:30

It's an absolute honor and I will continue to do this work for as long as I can and will continue to find new ways to reach more people, and I try to stay pretty involved with nonprofits in my area. And, oh, I could tell you a little bit about some of the work that I've been doing. Endo Black is an organization that provides a safe space for women of color who are dealing with endometriosis, and I absolutely love them. They're based here in Maryland and they are getting ready to roll out their fall schedule. They have a gala that's coming up, which is one of their big fundraisers, and they also do these talks where they talk about African-Americans and endometriosis, and I'm one of the folks that gives this talk, so I let them know. If you ever need someone to talk to the community or to clinicians or med students and nurse students, just give me a call. I'm always happy to teach about endometriosis, so they'll be rolling those back out again. So I'm excited to be able to share a lot about just the history of endometriosis and the experience of Black women to the community and especially to nursing students and medical students. Those are my favorites.

Speaker 2:
40:42

I'm just particularly excited that we're partnering with Emma my-aimacom. They're a CBD suppository they just rolled out amazing organization. Please look them up. Also, check out the founder, lana. She's one of the founders and she's amazing. She knows what we've all been through. She created this product for herself and I'm just so thankful that she has chosen to make this a business where she can help to treat chronic pelvic pain and painful periods for people across the world. Really excited about that partnership too. So keep an eye out for those things. You can follow me on instagram at the rebellious uterus. You can also follow my husband, and his podcast is at endo thick of it it's amazing.

Speaker 1:
41:37

Yeah, it's amazing. So if you and your significant other need a space to join together and be a team in this, kimather and Brandon, you two provide that with EndoThick of it. So.

Speaker 2:
41:50

We just fill in a space because I feel like it wasn't there. I was like man. There's tons of us who are in relationships, who are having to navigate these waters on our own. We really just wanted to provide a place where people could hear from another couple who's also navigating this. You know too, so would love to have you and your hubby on Love it yeah.

Speaker 2:
42:15

Because I just I can't tell you how amazing the feedback is that we get when people hear from other couples and hear from other folks like, oh wow, we struggle with that too, and they also can feel more seen and validated. So I absolutely love it.

Speaker 1:
42:34

Well, and it all goes back to a strong community. When you have a community behind you, you feel more seen, you feel more heard and you feel more connected and therefore you feel less isolated. And this disease is very isolating. And so when you get together with your community, you feel less isolated and it makes it more bearable.

Speaker 2:
42:56

It makes this?

Speaker 1:
42:57

living with this chronic illness more bearable yeah absolutely right, absolutely right.

Speaker 2:
43:04

One of the things that we're considering and we'll put it out there to just see interest is a support group that's couple specific. Yes, I'm seeing more and more endometriosis support groups out there.

Speaker 2:
43:18

I'd love to see more with like adeno and PCOS, but I'm seeing definitely more endometriosis support groups. But our family member, our partners, our spouses they're going through it too. Oh, absolutely, and they're having to see the person that they love most going through this. They need the support too. They really do so. I'm glad that I'm seeing more support groups for us patients, but I think that it would be nice to have more opportunities where partners can come in too. You'll definitely see that from the nonprofit formerly known as Endoville.

Speaker 1:
43:53

And Endovillage, which is the one that we have. So very similar we have. We have targeted that as well. So we're going to be starting to do more events for the support people specifically and helping those walking chronic illness and doing it together and what that looks like.

Speaker 2:
44:12

Oh, that's amazing. I don't know if you started doing it yet, like with the, with the partners, but, man, when Endoville did it, it was awesome. They would have you know, bring your family member, bring your partner, you know, and sometimes they'll have a counselor there where people could share, and sometimes it was the first time that the partner was even ever asked. Well, how do you feel about what your?

Speaker 1:
44:38

partner's been going through.

Speaker 2:
44:40

There was a lot of thoughts of helplessness and frustration, sadness, fear, anxiety. So I'm so glad that you're doing that in the village too, because the partners need. They need that safe space also. And then we as the patients the one with the chronic illness need to know that our partner is being cared for too, because just because we're patients doesn't mean that we're not also caregivers. We're caring for our partners too.

Speaker 1:
45:09

And we want them.

Speaker 2:
45:10

We want them to be in a good place mentally. That you know a support group that includes them really helps with that.

Speaker 1:
45:16

Yeah, absolutely. And I think it's twofold when you're dealing with infertility on top of a chronic illness and the disappointment of potentially not having your own kids or the expense of not being able to. This is a full circle right. It's a full body disease, it's a full life disease and it encompasses everyone within your circle and beyond. So we need to really rally behind everyone dealing with this, not just the patient, because it affects everyone.

Speaker 2:
45:43

So Absolutely Thank you for all the work that you are doing. It's been so amazing to just see everything that you're doing flourishing. So just keep doing what you're doing, because I'm just so glad that the people in your area have you both really championing this work and somehow you're still staying on top of this amazing podcast at the same time. So, yeah, keep up the great work. Thank you so much. Thank you. I love sharing your podcast with folks and they love it, love the information.

Speaker 1:
46:12

Well, thank you, and for those that continue to listen and follow really putting the information out there, and what Kimather is doing, what Brandon is doing as a support person, and what we continue to do is to get the information so that you have better tools to advocate for yourself. So, with that being said, continue advocating for yourself and for those that you love.