Eps. 18 | Autoimmune Disease: The Search for Answers

Autoimmune Disease: The Search for Answers” featuring Paige Hood, FNP from Urban Unwind.
In this honest and encouraging conversation, Paige shares what it is like living with autoimmune disease while helping others navigate it as a provider. We talk about the confusion, self doubt, frustration, delayed answers, and the emotional toll that can come with chronic illness.
Paige also discusses advocating for yourself, and the importance of finding providers who truly listen and look at the full picture.
If you have ever felt dismissed, overwhelmed, or exhausted searching for answers, this episode is for you. 💜
Urban Unwind
urbanunwindspa.com/
701-483-6666
Women Empowering Women
wewnetwork.org

The EmpowerND Podcast is hosted by Women Empowering Women, a membership based non-profit organization dedicated to connecting, supporting, and educating women. Through community, events, and resources, Women Empowering Women helps women grow, build confidence, and explore their potential, supporting them every step of the way as they become the best version of themselves. To learn more about Women Empowering Women’s projects or how to become a member, visit wewnetwork.org.

Transcript

SPEAKER_00 0:11

The Empower Indie Podcast is produced by Women Empowering Women, a nonprofit organization dedicated to connecting, supporting, and educating women to help them become the best versions of themselves. To become a member or learn more, visit wewnetwork.org. Welcome back to the Empower Indie Podcast. Today we're stepping into a conversation that sits right at the intersection of medicine, lived experience, and what it means to truly feel heard in a healthcare setting. We're joined by Paige from Urban Unwind, who brings a unique dual perspective as both a healthcare provider and someone living with an autoimmune disease. That lived experience has shaped not only how she sees the medical system, but how she shows up for patients navigating complex and often frustrating diagnostic journeys of their own. Let's get started. Can you start by telling us a little about yourself?

SPEAKER_02 1:08

Yeah, so um, like you said, I'm a nurse practitioner. I work over at Urban Unwind, um, kind of specialize in a couple different niches, um, like hormones, um uh cannabis, um, weight, um, mental health, and then have kind of been diving into the autoimmune side of things too.

SPEAKER_00 1:27

Okay, so can you explain what an autoimmune disease is and how they impact the body?

SPEAKER_02 1:32

Yeah, so basically an autoimmune disease is where your immune system um is recognizing your own body's um tissues as um something that's a foreign substance, something that it needs to combat. And so you basically get inflammation um in those systems and different autoimmune um diseases impact different um body systems, so um different organs, um, joints, um, brain, all of that.

SPEAKER_00 2:02

So, at what point did your personal experience with autoimmune disease begin? And then how did that kind of shift the way you see medicine?

SPEAKER_02 2:10

Yeah, so um I not entirely sure where I can pinpoint, you know, where symptoms started. It was kind of a slow burn, um, started with honestly with just fatigue, and then um, you know, over time symptoms kind of progressed. Um, I would say around the time of my first pregnancy is probably when things really started to flare up. I started getting more um symptoms. Um, honestly, a lot of them I kind of brushed off and explained away. Um, and then when I went back to school to be an NP, um learned a little bit more in depth on, you know, autoimmune processes, um, started recognizing patterns in myself that I was learning about. Um, and so then when I um became an NP, that's when I uh actually did my own kind of diagnostic testing, um, uncovered autoimmune disease. Um, and then from there it kind of shaped my perspective on other patients' experiences. Right.

SPEAKER_00 3:10

So how has living it with an autoimmune condition changed the way you interact with your own patients?

SPEAKER_02 3:15

Yeah, so I think um before kind of understanding um what exactly an autoimmune disease feels like, um, you know, when you go to school, textbook medicine uh has a very different way of how you approach patients. It's uh, you know, um you do your diagnostic testing, you diagnose, you treat, you see them, you know, in a couple months. Um when I first started uh experiencing symptoms, I went to my primary um and was offered a sleep study and an antidepressant. Um and I didn't feel that was right. Um and so just kind of understanding and um feeling what that autoimmune process feels like in my own body, um, I'm able to empathize more with other patients and um understand that labs may not pinpoint, you know, uh the severity of the disease or exactly what's going on. Um, but I'm able to understand, at least to some capacity, that um there's so much more happening underneath.

unknown 4:24

Right.

SPEAKER_00 4:25

So being dismissed in silent illness. So many patients who have been diagnosed with an autoimmune disease feel like they were dismissed in the medical system while seeking a diagnosis. Um and you kind of talked about that, you know. And and I think it's important to say too that those providers that are dismissing, they're just taught in a different way and and really truly are doing what they think is the right thing to do for the patients.

SPEAKER_02 4:50

Absolutely.

SPEAKER_00 4:50

And so it's not necessarily that they like are maliciously dismissing people, but it's more of it's a systems issue. It's a systems issue, yeah. Yep. So what does silent disease mean to you in the context of both your own health and your patients?

SPEAKER_02 5:04

Yeah, so um a silent disease uh is something where your experience in your body isn't really projected outwardly. So for example, I woke up a couple days ago in a flare and I went to work the past couple days. I'm here. Um, it doesn't look like I'm dealing with anything or battling anything, but um the symptoms that I experience are very much real and they're um can be debilitating at times. Um, and so from the outside perspective, it might look like I'm feeling okay. Um, and that leads to a lot of um doubt and and self-blame because then you think, well, maybe it is all in my head. Maybe I'm exaggerating my symptoms and it's not as bad, and I just need to toughen it, um, toughen up and um deal with it. Um and so I've had to really coach myself on that um and not put as much um blame onto myself um and being more supportive of my body instead of fighting against it. Um, and so that's the same approach that I have for patients too, um, is that we need to support your body instead of fight against it.

SPEAKER_00 6:16

Where do you see the biggest gap between textbook medicine and what patients are actually living through day to day?

SPEAKER_02 6:22

Um, I really there's such complexity to, I mean, especially autoimmune diseases, but a lot of disease processes, and it's not a linear, um, you know, fit into a neat little box picture almost always. Um labs may not show um, you know, what's happening inside the patient's body, and they may might look just fine. That doesn't mean that the patient's feeling fine. Um, and each system interacts so intricately with all the other systems in our body. And I think we kind of categorize each system in its own little, you know, section instead of kind of looking at the full picture and understanding that, you know, this hormone system is going to impact your thyroid or inflammation and kind of connect those dots and look at the patient more as a whole person and um a full body, you know, rather than a one system or one disease.

SPEAKER_00 7:18

Yeah. I think something that I've really been fascinated with um kind of since since kind of going out on my own would be the how the how much the GI system affects everything and how much hormones are affected by what you eat and and how true it is that food is medicine. So what have you had to um like unlearn medically because of what you saw in real patients or in your own body?

SPEAKER_02 7:44

Um, I think one of the biggest things for me is going off of reference ranges for labs. Um, for example, my thyroid patients, you know, that reference range for a TSH, that thyroid hormone is such a big range. Patients usually feel best when they're in this more specific range. And so on paper, thyroid looks great. We don't need to adjust anything or do anything. Um, but symptomatically, the patient, you know, is describing symptoms that mean that their thyroid's not working properly. So we're still going to treat it regardless of what that, you know, reference range uh looks like. So that would say probably one of the number one things that I've had to unlearn.

SPEAKER_00 8:24

Yeah. What does effective self-advocacy look like for a patient navigating a complex or confusing diagnostic process?

SPEAKER_02 8:31

So the first, first of all, um it's not always a quick answer, easy fix. Um, so you know, just having patience with the process, um, but also at the same time not taking uh, you know, uh one treatment plan or one answer as that's it, that's the direction I have to go. Um I love when patients come in and they've done some research, they've done some reading, they have ideas, they're like, I read about this, you know, supplement, is that something that we could consider? I love that because that means that they are um, you know, informing themselves. And yes, my job is to do that too, but even with, you know, longer appointment times, we still can't cover every single basis. Um, so coming um to appointments prepared, um, taking uh second opinions, um, if you don't feel like you're getting anywhere with the treatment plan that you have, get a second or a third opinion. Right. Um same with like a hairdresser. If you go to, you know, a five-star hairdresser, they don't do your hair the way you like. That doesn't mean they're a bad hairdresser. That just means they're not they're not the one for you. They're not the one for you, which is okay. And that's yeah, completely fine. And so you kind of need to, I don't want to say shop, but you kind of need to search.

SPEAKER_00 9:45

Well, and even as a provider, I don't ever get offended when someone when I'm not the right person for them. Right. Because it means that they're not going to get where they need to go. And my goal ultimately is to get them where they need to go. Whatever that looks like. Even if that means it's not with me. You know, and and I think that when they do come with their ideas, it's so fun too. It's like interactive and it's you know, you're bouncing ideas off of each other, and they're a lot more patient as well, I think, because you're accepting of their ideas. And if that idea doesn't work and you offer something else, they're a lot more accepting of that as well. And it's more of a collaboration and a partnership. Exactly.

SPEAKER_02 10:23

And that's ultimately what healthcare should be. Right. It should be, um, I mean, the patients that is their body, that is their experience, it's their life. They should be in charge of their health. Right. I shouldn't be sitting here telling them what to do with their own body. It needs to be a collaborative effort. I take my knowledge and my experience and education and provide, you know, uh options and, you know, um treatment plans. And then it's up to them to, you know, make that decision on what's going to fit best for them.

SPEAKER_00 10:50

Well, and I think I always try to add some safety things too, you know, like if it really is something that has some red flags and they want to try a supplement, it's like, hey, we really do need to do this other thing and explain it to them. Like, I am absolutely okay with that option, but let's also do this because maybe we do need to get an ultrasound of your thyroid, you know? Right, right. Those types of things and and just guide them safely to finding the route that's the right one for them.

SPEAKER_02 11:17

Yeah, absolutely. I I 100% agree with that.

SPEAKER_00 11:20

What does a good appointment look like to you when someone is coming in with symptoms that are hard to pin down?

SPEAKER_02 11:26

Um, I would say that um they feel heard, validated, and understood. Um, that there is some sort of uh treatment plan in place, even if it's small, even if it's I have no idea what's going on, let's start here and work our way through things. Um, and then there's space for um vulnerability, for them to share things, for them to ask questions, to ask for clarification if they're not sure on things, um, to, you know, have a second, you know, opinion. If they don't feel comfortable with something that I'm recommending, to ask about it, to go home and think about it before saying yes to, you know, a plan of care. Right. Um and then just developing that that trust and that relationship with your patient.

SPEAKER_00 12:10

And I think the having the compromise too of like, I am suggesting this, you'd like to do this, why don't we meet somewhere in the middle and then we can always revisit it.

SPEAKER_02 12:19

Absolutely.

SPEAKER_00 12:20

So uh what has your experience taught you about healing that you wish more people understood?

SPEAKER_02 12:26

Um, I think one of the main things is healing is not linear. Um, I have, I'm probably the worst patient when it comes to being a patient. I want things to work and I want them to work now. And I have pretty poor adherence with things because I just want to start feeling better and, you know, make progress. Um, and so, you know, it's something that you need to give time. You're going to have ebbs and flows. Um, yes, I'm better than I was before my diagnosis. That doesn't mean that I don't have flares and I have my bad days, but overall, my quality of life is better. Um, and that um it is complex. So sometimes uh, you know, I don't have the answer right away is okay. Um, as long as you're working with the patient on, you know, diving deeper into getting those answers. Right. Um, maybe it's a root cause or causes, um, you know, and and just figuring those out and working with um your patient on, you know, getting better and having honestly just a better quality of life. Right.

SPEAKER_00 13:27

And I think that when you have those that collaboration and they trust you and they know that when they have an idea, you're you're taking it serious, or when they express a symptom or a new symptom or something else has changed, then there's a lot more patience when you don't know and you have to dig deeper and figure it out to not have you know that judgment as a provider, you're kind of worried sometimes too of being judged that you don't know what to do. And it's okay that you don't know sometimes. Yeah. That you have to do more studies or you have to research it even and figure out a good plan.

SPEAKER_02 14:00

Yeah. And I think that for the most part, that uh is well appreciated by patients to say, I don't know, let me research this and give it to you because I'm I'm not going to have all the answers by any means. Yeah. I'm still figuring out my own body, you know.

SPEAKER_00 14:14

So um I think that and and I think it goes a long way when you tell a patient, let me research it, because they're like, wow, you're going to research something for me. Like, I think that's pretty profound for them to know that you would take your time and go and research that thing for that person, you know, and learn more so that you could help them.

SPEAKER_02 14:34

Yeah.

SPEAKER_00 14:35

I think I think that goes a long way too.

SPEAKER_02 14:37

Yeah.

SPEAKER_00 14:38

So what would you say to someone who is currently in that stage of uncertainty, uh, still searching for answers and not feeling heard?

SPEAKER_02 14:45

Number one thing is um be patient with the process. Um be your own advocate. If you don't feel like you're getting anywhere, like I said, you know, seek that second opinion. You shouldn't, our medical system patients shouldn't have to be doing all the research on their end, but that is kind of the way it's set up. So do your research, um, come prepared with questions. Um, and then um, I mean, seek support. Um family, friends, let them know how you're feeling. Um, make sure that you have that support there too, because that's your your nervous system plays a pretty big role in inflammation and autoimmune processes, and um to make sure that you have a um a stable nervous system helps big time too.

SPEAKER_00 15:30

Well, thank you, Paige, uh, for helping us better understand autoimmune disease through both lived experience and clinical perspective. These are complex, often invisible conditions, and stories like this remind us how important it is to listen beyond the labs and the surface. Thank you to our listeners for joining us. Until us next time, stay informed, stay empowered, and we will see you on the next Empower Indie Podcast.