Season 5 | Episode 1: Navigating the Healthcare System with HS

Welcome back to Season 5 of The Hidradenitis SuppuraDivas! 💜

In this episode, Brin and Cyd dive into one of the most overwhelming parts of living with hidradenitis suppurativa (HS): navigating the healthcare system.

From building your medical team to maximizing those 7-minute dermatology appointments, this conversation is all about reclaiming your voice as a patient. If you've ever felt dismissed, rushed, unsure how to ask for what you need, or overwhelmed by insurance barriers — this episode is for you.

We talk about:

✨ Finding a dermatologist who truly sees and validates you
 ✨ Why it’s okay (and necessary) to switch providers
 ✨ How to prepare for appointments so you make the most of your time
 ✨ Prior authorizations and insurance hurdles
 ✨ Biologic access and pharmaceutical assistance programs
 ✨ The power of patient advocacy and storytelling
 ✨ Why your support group belongs on your medical team

The healthcare system may feel broken — but you are not powerless in it. Advocacy starts with preparation, confidence, and community.

If you’re navigating HS care right now, know this:
 You deserve to feel heard.
 You deserve proper treatment.
 And you deserve a team that works for you.

🔗 Resources & Support

Find tools, prior authorization templates, advocacy resources, and community support at:
👉 HSConnect.org

Follow for education, updates, and community:
📲 Instagram: @hsconnectorg
📲 Instagram: @socialcydd

If this episode helped you, share it with another HS warrior.  See you next episode 💜

This podcast was made possible by our sponsor Moonlake, and past sponsors UCB and Sanofi.

Transcript

SPEAKER_00 0:00

We're the Hydratonitis Superedivas. HS you'll want to meet us. It's not your fault with the shame to a hulk. HS didn't know how to have a ball. The Hydratonitis Superedivas! The Shape Tool Hulk. It's not your fault. Welcome back to another episode of Hydra Donitis Superedivas. Of course I'm here with Bryn, and today we are going to talk about navigating the healthcare system. Which to a lot of people with HS seems like, why would you even want me to do that, sis? Like, you know it's broken, but no, this is how we fix it by communicating, taking what we've learned from our own journeys and sharing it with one another. I know I felt I never felt more equipped to go back to the dermatologist after my little five to seven year break. Um, it took hearing other people's visits with a dermatologist. It took getting courage, you know? So um I'm excited to hear what Bryn has to think about kind of like building your medical team and navigating that system and what that looks like.

SPEAKER_01 1:05

First off, I just want to say it's okay to be overwhelmed by the whole thing. I am overwhelmed by the whole thing. Um and it's a lot to manage. They're once you find a good derm, I think, especially for dealing with your HS, follow that person. Stalker style, even if you have to. Um, because they're like worth their weight in gold. And if your dermatologist that you're seeing is not the right person for you, then change dermatologist. You don't owe them anything, you don't, you're not, you haven't signed a contract to stay with them. Um, yeah. And if you have, then we need to have a separate conversation, so email me. Um but you need to be with someone who makes you feel seen, heard, and validated and comfortable. You want someone who can take um, I was gonna say can take the time with you, but we know that that's such an issue for the healthcare field right now. Um they get an average of seven minutes per patient. And I just want you guys to know that that is not their choice. It is the way the system has been created.

SPEAKER_00 2:16

So Which is already helpful because now you can take that chip off your shoulder when you go there and maximize your seven-15 minutes versus feeling like you don't have time anyway. Go in there with your notebook, go in there with your papaya app, go in there with what you want them to know first and foremost, and then kind of like see what it takes you. Yeah, I think no, and I knew that it wasn't their fault to only like, I'm like, girl, you're not in charge of your schedule? And they're like, no, yeah, yeah.

SPEAKER_01 2:46

I think it's super important to know and understand that because, like you said, it does take the chip off your shoulder, and like you stop blaming them. They're just working in a system that they have to work in. Um, you know, there is no like small family doctors anymore and in single clinics, and that's because that's just not the way the world works anymore. Yeah, so understanding that, and I think it really, to your point, makes sense to maximize that appointment, knowing that you have such a limited time. Get your stuff prepared, ask, have the questions that you want to ask. Um, and just for that reason, because they don't have enough time, first of all, you couldn't spend 24 hours with uh a derm and understand everything there is to understand about HS and what your journey may look like. So there's no way that they could cover everything anyway. Um, nor would you really want to hear it from them because they haven't walked the walk. So it's kind of you know, you want to hear that from other HS patients. Like, what does this journey potentially look like? And then what are the tools that I should have or use to make the most out of my journey? And yes, this sucks, but then how do I how do I do what I can to make it better? Yeah. Um so I think starting off with a a good derm is the right place, then they can also help you navigate through that most of the time. They'll have other specialties that they recommend, like an endocrinologist if you're having um metabolic issues or anything like that. They will have a team of people that they can recommend you to. Um, so trust their recommendations. But again, even if they recommended you to somebody and you don't match up with them, it's okay to switch doctors. It's always okay to ask for a second opinion. That does not insult them. Um, it is your right and responsibility as a patient, if you don't feel that you're getting the care that you need, to move on to another provider. Um, so if anybody's feeling that right now, take this as your cue to find another provider. That's the speech level. Yes.

SPEAKER_00 4:42

Um I think also when it comes to your HS journey, it's it's recognizing where you're at, right? So a lot of people do experience symptoms early in age. I know I did, and I probably could have met a diagnosis sooner had I been comfortable enough to mention to my primary care doctor, hey, this is what I'm experiencing in these areas. But because he never asked, I never said, and I know it took a long time for me to reach this part in my journey. Back then, you know, I was just a kid, I'm full of shame and I like things, but now I I'm talking to my kids about are you having um if you're experiencing anything anywhere, let me know so we can let a doctor know. Then your primary care doctor could then get you that referral to the dermatologist. I kind of missed all of that because I didn't have enough faith in the doctor who saw me once a year, faithfully, for a physical, um, because I did it, I didn't give him that chance. Granted, he didn't ask the probing questions, but I didn't give him that chance either. And I think it's taking the patients a it's it's a huge step when we say what we're actually dealing with and we're giving the doctor a chance, even though we know there's a possibility that they'd be like, HS, how do you spell that? And I know that's so like we cringe, right? When they're like, oh my god. But at least now maybe it's getting written down in your chart. It's there's it's it's that that proof that's in the pudding that now we can kind of see where this goes and let them know if they're not gonna, if they're gonna gaslight you, like you said, find a new doctor, but at least now that's there, they're like, hey, I've been mentioning to this person that I'm experiencing this. Can I get a referral to a dermatologist? Or even like people who are in their childbearing years. I remember like the same midwife delivered my first three children, and I'm like, yeah, but also like we're not gonna talk about it. I was kind of waiting for you, yeah, wait for me. She's like, Oh yeah, I know what that is. I'm like, oh, you know, like we never talked about it, you see in between my legs, you know, like it was just like not talked about, but I'm like, okay, well, maybe if I would have talked about it, like maybe I I don't know, but I didn't give my doctors a chance. I can say that now, like, I'm just kind of like isolated, even in the appointment, you know, like you don't want to take your clothes off, you don't want to tell them about it, you want to hide it as much as you can. But I think the more we're gonna spread more awareness and good awareness when we're just willing to have that conversation with whatever doctor we're in front of, whether that's your primary care or your dermatologist or your OB, um, kind of give them the opportunity or give yourself the opportunity to educate them too and be like, oh, you don't know how hydrogen superactivity is bam. Let me let you know. Yeah, AJS Connect has the definition right here, boom, boom, boom, boom, boom, you know, and and and kind of have that proof in the pudding.

SPEAKER_01 7:28

Yeah, definitely. Hey guys, sorry to interrupt. I just want to talk about something that I think a lot of us in the AJS community overlook, which is clinical trials. I know, I know. When you hear clinical trial, your brain probably goes to a lab coat and a clipboard situation. But honestly, it's not like that. Being in a clinical trial is just going to the doctor's office. You're seen by a care team, you have appointments, they're checking in on you. It genuinely feels like some of the best, most attentive medical care you will ever get. And here's what a lot of people don't realize it's completely covered. You're not paying out of pocket for any of it. And many trials actually help with travel costs too. So getting there isn't on you either. For those of us who've dealt with HS and know how expensive and exhausting this condition can be, that's actually a huge deal. Beyond the personal stuff, every person who enrolls helps us get closer to better treatment options for everyone living with HS, and that matters because we all know how much we need more treatment options. A big thank you to Moon Lake for sponsoring today's episode and for supporting the HS community in a real and meaningful way. We'll drop a link in the show notes if you want to learn more. All right, all right, now back to it. And I think the other thing to pay attention to as well is, you know, a lot of patients feel like, oh, well, I can't get on a biologic medication or I can't access what I potentially need because of my insurance without actually going through that process and looking into it. Um there are also like if you choose to go the biologic route, most pharma companies have programs that they run that will help you get the medication that you need. And there are a couple of different options usually. So I would implore you if you think you're one of those people who can't get on a biologic because your insurance won't cover it or whatever issue you have, check their websites to see what kind of programs they offer because I think you might be surprised at what you'll find. Yeah. Um, and also, you know, prior authorizations for people who don't know what they are, a lot of times for bigger medications that cost more money or specific types of treatment, you have to get a prior authorization from the insurance company, which your physician will submit to them, asking them to approve this cost up front before you have that medication or procedure or whatever that may be. So keeping in mind that the HS Foundation, you can also find them on our website at HS Connect, and it links back to the HS Foundation's website. But if you know what you're going in to ask for and you want to be prepared in the best way possible, go to the website and print off the prior authorization template and take it to your doctor. It literally has been written up with all of the um research to back up, whatever the ask is. It's got all the references, all the work has been done for your.

SPEAKER_00 10:31

Joey was just saying he finally like took it to his doctor and made him look at it, and the doctor's like, oh, this is nice.

unknown 10:37

Yeah.

SPEAKER_01 10:38

Like, yeah, we're all even done to like because these are the things that eat up the doctor's time. These are the reasons why they have seven minutes to spend with you, these are the reasons why their nurses can't answer the phone all the time because they're working on all of this stuff in the background that takes them forever to get a patient help on. Um, and then ask them, you know, are there alternatives if your prior authorization is denied? Or at that point, go and look at the pharma companies if you're trying to get on a biologic. What programs do you have that can help me? I know that there's a program um for Benzelex that you know they'll fight the prior authorization in the background while they're covering your medication. Wow. So there's a lot of things that are out there that we just don't know where to look and how to access those things.

SPEAKER_00 11:24

And I think just living with a chronic illness, like we like for me, sometimes like if I don't have a clear ADC D E F G step process, I'm stressed. Stress just makes me flare. So like I will I will neglect the situation because I don't know how to do it. And and it took being friends with people like Brent Lane because she's she's a very get shit done type of gal. Um, and so like I was inspired by that, and it's like, no, if you can have the power to do something, do it, and just learning how to advocate for yourself as the patient is really huge because as much as we don't want to admit it, us Americans we are living through a broken medical system that desperately needs fixing, and the doctors are not the only people who can fix it. Yes, legislation is not the only people who can fix it. If I learned anything going to Hill Bay, it was like we the patients have so much more power than we think by storytelling, by being prepared, by asking the questions, by going through the complicated step processes to make sure that you're getting the medication that you deserve. I mean, advocating for yourself will never end, and so just making sure you're connected with patient orgs like HS Connect, who have so many resources for you to go and take and implement in your own journey is like is gonna be the key to making sure that you're not one of those marginalized people in the medical system that are getting lost and not getting the care that you deserve.

SPEAKER_01 12:53

Speak up. Yeah if you're uncomfortable, say something. And I know how hard that is. Yeah, you know, a lot of people have white coat syndrome, which was talked about on another episode of um the Healing Space podcast, um, and why that is actually a thing. So finding your inner voice is hard, but damn, when you find it, then you can't shut it up.

SPEAKER_00 13:15

So that's the way it's supposed to be, and so I think when it comes to building your medical team, so many people are living with HS and another disease, or they have comorbidities and they're worried, or they have you know genetic dispositions, and so you know HS isn't the only thing that you're worried about, so make sure that like you're locking in with a good dermatologist. Like she said, if you don't like what you're getting, go find somewhere else, um, making sure that like you're getting regular checkups, if you have other, you know, conditions that you're getting those treated and you're not neglecting those just because you have HS. So if you're a woman, you're making sure that you're you should have a you should have a guy in the on your medical team, you should have a dermatologist on your medical team. If you, I mean, I'm very biased. I don't have a I probably should have a primary care doctor, but I'm very I'm not like crunchy, I'm not a crunchy mom, but I'm just like we don't need to go there unless we need to go there, you know? So like they're kind of like more or less back to the back of my list. But as an HS warrior, I know the number one people on my medical team is my dermatologist and my patient support group because those are like what is gonna keep me in line and like at the best of my best. So your medical team can look different. I'm obviously pregnant too right now, so like I have a midwife, she knows about my HS. Um, so it's it's finding those people, and I can say I have a midwife because I fully hated giving birth in the hospital. I don't need 19 people when it's time for me to push to come in looking at my hoo-ha and all of the like this is not a show, this is an experience for me, and I should I should be able to embody it like one, and so I personally love being able to give birth at home in the piece of my own energy and era and area. Um, so like my midwife is on my care team right now, that won't always be, but I made sure she knows about HS, she's very well versed, so your your care team will change, but just making sure everybody on it knows about your HS.

SPEAKER_01 15:16

Yeah, absolutely, absolutely. It's hard to talk about sometimes, but it's so necessary. Yes. So all right, thank you guys for joining us for this episode. Hopefully, you found it a little bit helpful, even if it was just to tell, explain that it's not a the doctor is not doing this, they don't want to spend seven minutes with you, they really do want to help. Um, and that's why they got into the field is to help people. So find your people, find your community, find your physicians, and then don't let them go. Ever. Yeah. See you on the next episode. Bye guys.