SPFPP 391: Who Helps the Helper?

Summary

Podcast Summary: SPFPP 391 - "Who Helps the Helper?"

Podcast: Something Positive for Positive People
Host: Courtney W. Brame
Guest: Licensed Therapist, HSV2 Positive
Date: October 24, 2025

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Episode Overview

This episode explores the often-overlooked topic of support for those who are active in supporting others—specifically, a therapist living with HSV2. Host Courtney Brame and his guest dive into the guest’s personal journey with herpes, the challenges of navigating the medical system, and the complexities faced by helpers when they themselves need help. Emphasis is placed on coping with diagnosis, misdiagnosis, medical stigma and misinformation, and the mental health tools useful for people living with herpes (including DBT—Dialectical Behavior Therapy). The conversation underscores the importance of remembering one’s identity outside of diagnosis, integrity when managing one’s sexual health, and the universal need for support—even among professional helpers.

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Key Discussion Points & Insights

1. Guest Introduction & Connection

• The guest is a therapist specializing in Dialectical Behavior Therapy (DBT), lives with HSV2, loves dogs, reading, and exercise.

• The guest discovered the podcast by chance through a friend’s search for "positive" content—ironically resulting in the herpes-focused show ([04:00]).

  “My friend was looking for a positive podcast...she typed in something positive...she knew that I live with herpes, so she shared it with me.” — Guest ([04:00])

• The host acknowledges this as a common and sometimes awkward entry point for many listeners.

2. Reacting to Diagnosis & Medical Experiences

• The guest’s HSV2 diagnosis process was marred by medical misdiagnosis, misinformation, and feelings of invalidation ([06:54]-[19:14]).

  • Symptoms began while traveling, resulting in an urgent care visit and an initial dismissal.
  • Later developed rare but severe neurological complications (Elsberg syndrome), including incontinence and numbness.
  • Navigating hospital care was isolating and anxiety-inducing; doctors continued to dismiss symptoms and provided incorrect information about HSV2 transmission.
  • Only the gynecologist offered proper validation and care, prescribing antivirals and providing exceptional support.

  “I was, you know, at night, about to go to sleep and I noticed lower back pain...my butt was becoming numb. It was almost like I'd been sitting down too long...this isn't how it normally feels...I came across something called Elsberg syndrome...understandably I was scared.” — Guest ([08:38])

  “The doctor told me...it couldn’t be spread when you weren’t symptomatic...I did challenge him on it...he didn’t believe that [CDC guidance].” — Guest ([24:00])

• The validity and compassion from her gynecologist was a turning point ([17:55]-[18:55]).

3. Helpers Needing Help

• The discussion turns toward the emotional complexity helpers experience when they become those in need:

  • The guest reflects on being patient and forgiving with the medical system, attributing this to understanding people’s fallibility rather than a lack of standards ([21:37], [22:19]).
  • The host and guest both discuss the struggle of shifting from ‘helper’ to ‘recipient of help’, the discomfort in vulnerability, and shedding identities strongly tied to caregiving or advocacy ([39:18]-[43:10]).

  “I’m used to being the helper, not necessarily the client. And it's sometimes difficult to have that switch.” — Guest ([39:18])

  “My ego was attached to being the hero or helping everyone and saving everyone. So I resonate when you talk about being in that giver role and then having to be in another space, a different identity, like with the diagnosis, maybe feeling like, damn, now I need support. Why the fuck do I need support? Like, I'm the supporter. I can't be out here needing support.” — Courtney ([42:23])

4. Identity Beyond Diagnosis & Personal Integrity

• The guest emphasizes the importance of not letting the diagnosis define identity, and maintaining integrity even when given reasons (such as faulty medical advice) to hide the truth ([26:15]–[27:46]).

  “We know who we are and having herpes, we are who we are, we just now have this diagnosis. And I think people really just kind of shy away from remembering who they were outside of their diagnosis.” — Courtney ([27:06])

  “There's a kernel of truth. I do have this diagnosis. It does affect me, and at the same time, it doesn't define me.” — Guest ([30:27])

• One of the key DBT principles discussed: “You may not have caused all your problems, and you have to solve them anyway.” ([28:30])

5. Misinformation in Medical Care

• They critique ongoing misinformation from the medical profession regarding HSV2 transmission—a common but dangerous problem ([23:07]-[25:09]).

  • The host points out how patients may cling to incorrect medical reassurances as excuses to avoid disclosure.

  “It shocks me that this is still going on, that the people who are saying that you don’t have to disclose...these are credible medical professionals, and a lot of us are looking for any reason not to go through...having to tell one more person.” — Courtney ([23:17])

6. DBT & Its Relevance for Clients Diagnosed with Herpes

• The guest outlines DBT as a toolkit for tolerating distress, accepting “two seemingly opposing truths at the same time,” and maintaining one’s sense of self beyond diagnosis.

• Key DBT value: holding the truth of the diagnosis and the fact that it doesn’t define a person ([30:00]–[30:27]).

  “From a dialectical standpoint...there's a kernel of truth. I do have this diagnosis...and at the same time, it doesn't define me.” — Guest ([30:27])

7. Navigating Stigma as a Therapist

• The guest expresses concern about clients finding this interview, citing internalized stigma and professional boundaries. The host normalizes this anxiety and reframes potential positive outcomes, such as client trust or creating connections ([32:53]-[37:21]).

8. Effective Help-Seeking: Advice & Boundaries

• Guidance for anyone (especially helpers) on asking for help:

  • Know what you need and want.
  • Ask the appropriate person.
  • Communicate your needs clearly.
  • Be prepared for a "no" and know it doesn’t reflect your worth ([44:13]-[45:05]).
  • Identify ‘safe people’ for disclosure/help by looking for consistency, reliability, and curiosity—not judgment ([46:40]).

  “If we share with them our diagnosis, we're like, hey, I'm dealing with...this is what I'm going through...for somebody to...be curious in you and what that experience has been like for you and how they can show up and see support you. Right? Making it and keeping it about you and your experience.” — Courtney ([47:17])

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Notable Quotes & Memorable Moments

• On misdiagnosis and self-advocacy:

  “No one put me on anything, so...I was just raw dogging this diagnosis, these symptoms...not really sure where to go, what to do, and it's painful.” — Courtney & Guest ([20:11])

• Grace for Caregivers:

  “I truly believe...people make mistakes, and that doesn't mean they're bad at their job...sometimes people do invalidate intentionally, and I don't think it was done intentionally.” — Guest ([22:19])

• Herpes & Identity:

  “We forget who we are outside of our diagnosis when we get that diagnosis...People think that they need to be brave to talk about this...We are who we are, we just now have this diagnosis.” — Courtney ([27:06])

• DBT principle for life:

  “You may not have caused all your problems, and you have to solve them anyway.” — Guest ([28:50])

• On vulnerability as a helper:

  “I'm used to being the helper, not necessarily the client. And it's sometimes difficult to have that switch.” — Guest ([39:18])

• Test of safe people:

  “There's a fine line between curiosity and being nosy. A nosy person...is probably going to be like, who'd you get it from? Right. But a person who's curious is going to ask, how are you?” — Courtney ([47:17])

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Important Timestamps

• [03:05] — Guest introduction: therapist, animal lover, HSV2 status.
• [06:54] — Journey of misdiagnosis and invalidation; onset of neurological symptoms.
• [19:14] — Timeline of outbreak and the development of Elsberg syndrome.
• [23:07] — Discussion of misinformation from medical providers about HSV2 transmission.
• [30:00] — Relevance of DBT for people living with herpes.
• [39:18] — Helpers struggling to become help-seekers; personal discomfort in vulnerability.
• [44:13] — Advice on effectively asking for help and recognizing support systems.
• [46:40] — Identifying "safe people" for disclosure and support.
• [47:17] — Best responses/support from others after disclosure.

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Takeaways & Resources

• Helpers need support, too: Even professionals in the helping field require validation and assistance in their own vulnerable moments.
• DBT as a useful toolkit: Skills from DBT—like dialectic thinking, distress tolerance, and self-acceptance—are highly relevant for those managing stigma and chronic conditions.
• Challenge misinformation: Even medical professionals may hold outdated views; self-advocacy and research are essential.
• Identity is not diagnosis: It is crucial to remember who you are outside of HSV2 or any condition.
• Support spaces and donation: SPFPP offers structured support calls and groups, now with a donation model to ensure commitment and value.
• Positive reframe of vulnerability: Sharing personal truths can invite connection and strength.

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Final Words

The episode is an honest, insightful exploration of what it means to be both a supporter and someone in need of support. It’s a reminder of the power of integrity, self-compassion, and community—not only for people living with herpes but for everyone navigating stigma, vulnerability, or the helper role.

Learn more or access support: SPFPP.org
Herpes support calls/groups: Visit the SPFPP website.

Notable Condition Mentioned:
Elsberg Syndrome — HSV2-related neurological disorder causing urinary retention and limb weakness; responds to antiviral treatment.

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End of Summary

Transcript

[A]

That is always so loud. Hello, welcome to Something Positive for Positive People. I'm Courtney Brain. Something Positive for Positive People is a 501c3 non profit organization supporting people navigating herpes statement. And we have December 12th our I'm gonna just make it a karaoke event actually. So December 12th from 5pm to 9pm and then maybe some stuff will be going on afterwards. We're going to have a karaoke night in Brooklyn, New York. You can go to SPFPP.org shop in order to get your tickets to that. We're going to be celebrating 400 podcast episodes. I hope to be able to hire performer and be able to just make this a really good time. I already paid for and rented out the venue so at this point really all you got to do is just get a ticket and show up to the space. And I'm yeah excited for the kind of cultivation of community that we're bringing together there. Support groups meet on Mondays, 7:30pm Eastern Time. The first and third Mondays are for women. The second and fourth Mondays are for men. All right, I'm facilitating all of these support groups. If that's an issue, I hope that you would consider some of the other options that we have available on the website as well. Well, directing people to other support groups that might be led by people of other genders. As of right now, I do not know anything that is exclusively trans or non binary and that's also listed on the site. But there is a queer fem led group, Queers and Femmes support group that you can find on the website as well, directing you to that option. And I think that's really it. That's it for the announcements. Shout out to people who have been wanting to be part of community. By signing up for the support group, I make it as simple as possible. You have a support call, we decompress, we talk about the things. And then in that that also guarantees that you don't show up to the support call and say things for or say things for the first time in a room full of people that you, you know, maybe feel uncomfortable with. There's a lot of reasons that I do it this way, but it's important that we have a support call one on one before you come into the group. And that's really all it is. It's just a space discomfort to go because I know it can be overwhelming to join a community or group of people and say some things for the first time that you might not have been able to say before. So no one can be like, I just want to be in the support group. We got to have a conversation first. All right. And with that said, today I'm going to be interviewing somebody. We got somebody, we got a guest. I put the call out and people have been responsive. So I'm appreciative that people still want to be a part of us, a part of this and help us get to episode 400. So I'm going to let you introduce yourself and then we'll just start with how we connected.

[B]

All right, so I am a therapist and I am living with HSV2.

[A]

Yeah. What else about you? You like dogs or cats? Like, I know there's more to you than that.

[B]

So. Yeah, so I am an animal lover by especially dogs. And yeah, I love reading, exercising, but mostly, mostly love my job.

[A]

Yeah. And what kind of therapist are you?

[B]

I specialize in dialectical behavior therapy.

[A]

Okay. Dbt.

[B]

Dbt.

[A]

I always hear it and I'm like, wait a minute. I never actually heard somebody say what it is. So I want to just start out with the question of just you sharing how we connected.

[B]

Yeah. So it was actually a funny story. My friend was looking for a positive podcast, just like something with light hearted and she typed in something positive into the search bar. And she knew that, you know, I, I live with herpes, so she, she shared it with me.

[A]

That is so funny to me that she was just looking for something uplifting and it was like, I'm looking for something positive. And then back you get this. And, and, and I guess having this sent to you, what did that do for you? I can imagine that it probably invoke some initial emotion.

[B]

To be honest. Not really. Really.

[A]

Okay, so here's where that's coming from. I think that a lot of people fear like being found out for having an association with an organization that, you know, talks about herpes. Right. Because people don't want. Think people that people don't want other people to think that they have herpes. And so. And I guess I need to also take into consideration that you are a therapist yourself and that you already told this person. But it feels like a form of like being outed or reminded of your diagnosis. And I guess that's where that's coming from for me. Like maybe I'm just projecting onto someone who is. Is just kind of chilling, minding their own business and then bam, this herpes podcast pops up to them from a friend.

[B]

Yeah, I didn't. I think she felt more uncomfortable than me in sharing it.

[A]

Say more.

[B]

She was very apologetic she was like, you know, I wasn't looking for anything. I just, I just, you know, I happened to type this in and this is what came up, and I thought of you. But, like, I'm not, I'm not. Because she is also a social worker, so she's not trying to stigmatize me in any way either.

[A]

Okay. Okay. So let's talk a little bit about being a therapist and your, I guess, early experiences with your diagnosis. I imagine that because you have the education and maybe you have tools and resources, it could make it easier. But then at the same time, like, you're also human and, and maybe those things might not have been as accessible to you in the moment of dealing with the early emotions and everything that come with the diagnosis.

[B]

So it was, it was interesting. I was, I, It. I started to have symptoms around Christmas and I really. And because, you know, I go away for Christmas, I was to another state. I didn't have the time really, to go to the doctor. I was leaving the next day. And so I had to unfortunately go to an urgent care down in that state. And they misdiagnosed me. They said it and said it was nothing. You know, I was negative with everything with blood work, you know, as. As, you know, it doesn't come up for, I believe, a few weeks to. Even months to. Doesn't come up in your blood work. So they, they kind of dismissed me. They said, like, oh, it's. It's nothing. It's just, you know, it's just discomfort. And. But I knew something was wrong. And so having that experience, I already felt invalidated. And then. And then I was also going through, unfortunately, my health care was changing my health insurance. So I didn't have great health insurance before because it was the end of, you know, December. So I wasn't. I didn't have insurance that covered the doctor that I normally went to, so. And who I trusted, they took the other insurance, the one I started with after the new year. However, because this happened mid December, my symptoms started then. I didn't want to wait that long, and I. So right away I knew something was wrong, had a feeling it was herpes, and. But eventually came back from out of town, went to a doctor, and they. Eventually, they told me some mis. Information about herpes, that it couldn't be spread when it wasn't, when it wasn't, when you weren't symptomatic, and that, you know, they didn't really tell me anything else about. So I didn't. Because I did so much research, you Know with looking at the CDC website and all these other things, I was very hesitant to believe them. And then going on, I noticed about two weeks later after the initial symptoms, I noticed that I was, I was actually laying in bed, you know, at night, about to go to sleep and I noticed lower back pain. And actually my, my butt was becoming numb. It was almost like I was, I'd been sitting down too long and like, you know where your foot falls asleep, you have that sensation of numbness. I had it there. And since I have a history of an injury to my lower back, I kind of, I dismissed it at first. But I was like, this isn't how it normally feels. And so of course this is at night, you know, maybe 9, 10pm and so I'm googling and you know how it, it is googling at night. So you're not necessarily, you're looking at worst case scenario. And I came across something called Ellsberg syndrome. It's a rare condition where the nerves in your lumbosacral region, so like the bottom of your spine, they're inflamed. And it's most commonly associated with HSV2. And so understandably I was scared. And I, I, you know, I finally went to sleep and woke up the next day and I noticed some more symptoms. The biggest one was being unable to feel the urge to urinate. And as that continued it, eventually it, I felt weakness in my legs. I felt. And then I couldn't necessarily feel the urge to defecate either. And it got within, and this was within two to three days. And it got to the point where between sessions I was using the bathroom between set every session just so I didn't accidentally, you know, urinate on myself during that time. And then so eventually after those three days I had, I went to the hospital. I was like, this is. Or no, I actually went to urgent care first and they said that it might be cowa equina syndrome, which is basically where it's a medical emergency. And it's basically where the nerves at the base of the spine are compressed and usually by the spine itself, the vertebra or through injury, something like that. I am by no means a doctor, so if I get anything wrong, people can correct me. And I. So then they said that, they said, you need to go to the hospital. So I went to the hospital and waited quite a while, which I was a little nervous about considering. They said it was an emergency, told the doctor my symptoms and immediately dismissed me, say, no, you can't have that. When I brought up the topic of Ellsberg syndrome. They dismissed me even more. So much so the resident dismissed me. So much so that I actually only spoke and looked at the attending because I was like, the resident is not hearing me. They did an MRI as they have to do with the caudal equina syndrome to rule out anything structural. And they did that, didn't find anything. So I waited about six hours, which, hey, you know, hospitals, it's crisis management. I get it. If it's not a medical emergency, you're going to wait. And I understand that, you know, it's not, it's not for, you know, long term care and it shouldn't be. And since it wasn't necessarily an emergency, I understand the weight. And the doctor didn't see me after the initial assessment, the nerd. I actually had to call over another doctor and ask them, hey, you know, what came of this? I, I don't necessarily, you know, know the outcome of the mri. And at this point I'm scared. I can't feel my legs as much. I, I was, you know, and it was scary. I didn't know where, you know, where it was going. And they eventually they told me that it may have something to do with the herpes, but we don't really know. So we're just going to send you home. You can go to your gynecologist. And while again, I understand that, you know, hospitals are not for medical emergencies or are for medical emergencies, it would have been nice to have a more definite answer. And especially, especially since I was right that it was Ellsberg syndrome. And so a few days later I went to the gynecologist, finally got an appointment and they, she heard me, she realized that I was dismissed at the hospital. And she even read some of the research articles from the medical journals that I had read and she, you know, put me on a high dose of Valtrex and eventually my symptoms, you know, abated. And she, she even, that was a Friday. And she checked in with me over the weekend, you know, giving me her personal cell phone number and even called me and she's like, you can call me at any time if you, you know, you may have to have a catheter at some point. And we, and if you need that, you know, I'm here. And it was extremely validating. And as of now, you know, I'm better after that high dose. I'm now on a suppressive dose and just to, you know, make sure that doesn't appear again. And then. Yeah, so up and then, since then, I've been good.

[A]

So whenever you. When you had your outbreak, that was when you experienced the incontinence.

[B]

So that was about two weeks later.

[A]

Oh, okay. So was it just like the outbreak? Because herpes lives in the nerves, expresses itself on the skin, so in the nerves, living there, maybe it's causing the inflammation, and then you have that neurological connection that's blocked essentially, to where you can't tell when you have to use the restroom. And then you take Valtrex and maybe a couple of days go by, and then bam, the inflammation resides and the outbreak goes away.

[B]

Yes. And they. Before the fir. The last gynecologist appointment, they actually didn't put me on anything, so. No, no one did, even the person that diagnosed me.

[A]

So you were just raw dogging this diagnosis, these symptoms?

[B]

Yes.

[A]

Okay.

[B]

And not really sure where to go, what to do, and it's painful.

[A]

Yeah. Thank you for sharing your experience. And I don't know if there was any, like, justice that was served at all or. Did you talk to anybody about that experience to. To get some type of consequences or something?

[B]

No, because ultimately I. I could understand, and that doesn't make it right. You know, being in the field, I am, especially with dbt, you know, there can be valid points, and it can still. There can be a kernel of truth, of validity in one point, and then the rest is invalid. And I can understand where they were coming from. It wasn't necessarily a medical emergency once I had the MRI and they made a mistake.

[A]

You're very patient and okay with that, despite the inconvenience that it calls for you. And I wonder how much of that is like, just grace for the medical system or you being, you know, adjacent or kind of in. In proximity to it. I guess, like, being so empathetic and understanding despite, you know, what you're having, that could be considered one of the worst times of your life to have the compassion that you have for these medical professionals that misdiagnosed you, dismiss you, gave you misinformation. Right. Like, how do you have that grace?

[B]

I guess it. It comes from, you know, the. The really. The principle that, like, I truly believe in that, like, people makes. Make mistakes, and that doesn't mean that they're. They're bad at their job. It doesn't mean that they're a bad person. It doesn't mean that they're. That they even did it intentionally. And hey, sometimes people do invalidate intentionally, and I don't think it was done intentionally.

[A]

Talk to me about this the doctor told you you can't. You're not contagious when you don't have symptoms, right?

[B]

Yeah.

[A]

So the reason that I'm asking that is because I. It shocks me that this is still going on, that the people who are saying that you don't have to disclose these are credible medical professionals, and a lot of us are looking for any reason not to go through the process of experiencing rejection, of having to tell one more person this. And doctors are just making it so easy for us to be able to say, oh, well, doctor, so and so. So I don't have to do that.

[B]

Yeah. And. And unfortunately, it's. It's a reality. This doctor was. Was misinformed. And I, I did challenge him on it. I said, well, in the, you know, the CDC website, it says that there, it. It can be spread without active symptoms and an active outbreak. And he didn't, he didn't believe that.

[A]

How did he express not believing that? Did he just say, oh, that's not true. Get out. Like, what was his way of dismissing it?

[B]

It was more like, oh, no, you. You. You have nothing to worry about. And it was. It was done in a way that was supposed to be comforting and at the same time invalidating, especially given that I knew that wasn't true.

[A]

Oh, all right. I thought you about to say something else. I looked at you, I was like, hold on. And you, despite having that approval from a doctor, you went with your own integrity and trusting yourself and be like, I don't think that that's really the case.

[B]

Like.

[A]

I'm wanting to ask you, what personality trait. What about you? What called you to go against the grain of what? Again, most people are looking for an excuse, especially like, if they're newly diagnosed. Like, oh, the doctor said, but you had more information and you knew. Like, I want to say, like, you know better, but. But you challenge the information that you receive, and when you saw it, you knew to do something with it. What? I. Yeah, I want to know what that is. Like, what is it bravery? Is it courage? Is it like, it is integrity? But what else could it be?

[B]

I don't. I don't think it's anything, you know.

[A]

Like, you can say that. Like, I don't think it's anything special.

[B]

But, yeah, I don't think it's anything special. I think it's. It's knowing what the right thing is.

[A]

Thank you for saying that. Now, here's what I wanted to get out of, like, asking the question to get you to say something along those lines. Is that I think people forget. We forget who we are outside of our diagnosis when we get that diagnosis. And it's so easy to become overly identified with a person who has herpes and like, assuming that people aren't going to want to be with me. So if people are going to want to be with me, then I need to be away from people or, well, I'm not going to tell anybody about this. Like, there's so many different thought patterns that can come from this. And people think that they need to be brave to talk about this. They think that they need to have the courage, they need to be motivated. They think that there just needs to be some type of. I don't, I don't know the word, but they think that they need some type of juice for. If you've seen Space Jam, micro secret stuff, which was just water and how everybody just showed up and, and perform, you know, like, we don't need those things. We know who we are and having herpes. We are who we are. We just now have this diagnosis. And I think people really just kind of shy away from remembering who they were outside of their diagnosis.

[B]

And I, I could understand that, you know, why people may, you know, it is, it is something you don't think about necessarily before you're diagnosed and, or something you think about that's like, like that can't happen to me almost. And hey, some people may think of that, who knows? But it's also like, you know, part of, part of my work is treating people that have very high risk behaviors and severe depression. And they, they, my clients, you know, they, they experience such terrible things. And one of the things, one of the principles, what we call assumptions in DBT is you may not have caused all your problems and you have to solve them anyway.

[A]

That doesn't feel fair. Why do we have to solve problems that we didn't cause?

[B]

What? And I, I kind of think of that like, because sometimes, you know, there are things surrounded us and we have to find, you know, doing things. We have to do it anyway, you know, despite our fear, despite the feelings of rejection that we may get, that we may experience. And it's still, if that's, if integrity is an important value of ours, we have to, we have to go with that.

[A]

Yeah. Is there anything from a therapy perspective? Right. Like, I understand that you do have this diagnosis yourself, but coming from a dp, a DBT lens, can you apply that to a herpes diagnosis? Like, what could a person with herpes get out of working with a dbt? Dialect diet. Oh, I was right. Dialect behavioral therapist.

[B]

Well, I don't think you know everyone. I think. I think everyone can benefit from the skills. They don't necessarily need a DBT therapist. However, you know, coming from a dialectical standpoint, which. Dialectics is two seemingly opposing things that are true at the same time. And when coming from that lens, I can understand that this is. There's a kernel of truth. I do have this diagnosis. It does affect me, and at the same time, it doesn't define me. And, you know, it also like it. The valid thing is, yes, I may be rejected by multiple people for having us, and that doesn't mean I shouldn't keep trying.

[A]

I noticed something, and maybe this is just an observation, but I. I know I do this thing where it is so easy for me to talk about, right, like herpes, from the perspective of, I run this nonprofit. This is what I do. I talk to people herpes all the time. Whereas, you know, talking about my own experience, at least early on, like, I've been positive for 12 years, to my knowledge, and over the years, I don't think that I ever really talked about my own experience. And so as I was sitting here, like, watching you, like, I noticed earlier when you were just talking about your own experience and that revisiting that, that it had, like, a slower pace to it. And I don't know if you were experiencing any of the, like, triggering emotions. Emotions of being in that moment again, but I know I noticed, like, when I was asking about how could a person with herpes benefit from dbt? Like, it picked up a little bit. Was there. Was there a shift in there for you? Can you name that?

[B]

Not so much an emotional shift, more of a. Well, an emotional shift, as in. I'm nervous right now. Yeah, about it.

[A]

Talking about your experience or talking about dbt?

[B]

No, no, you're right. Yeah. Talking about my experience. Because also, given that I'm a therapist, it's. There is still stigma. And to be honest, I'm a little nervous that some clients may find me and may find this podcast.

[A]

Can we just talk about. All right, so. So many people. I. I cannot believe my mom used to call me arrogant. I cannot believe how arrogant it is that y'. All. They got a 400 whatever podcast someone is going to that, you know, in your bubble is gonna recognize your voice with no name, no context, except for maybe a little bit of what you do. Right? And, yeah, I guess it is possible, but, like, if you have a client that does have herpes, that entry point of, hey, I was on this podcast. I have herpes myself. You know, check this out. That feels different than, you know, if you have a client who tells you that they have herpes and you, like, don't say anything. And then they eventually find this podcast and, like, why the hell didn't you tell me you were on this podcast? Because also, there's the. The point of them having to find your episode among all these episodes. And at this point. So it's a lot that goes into that, but I hear it often, and people won't do an interview because they think that someone they know might find this. And it's re. The reality is, the only people who I think listen to this are people who have herpes or who are going to date someone who has herpes, and this was recommended to them for that reason. So, yeah, I. I think it's important that I just name that. But I. I caught the. The shift. Like, I felt a shift in just your demeanor in talking about this from an objective place, and it made. It reminded me of myself whenever I talk about my personal experience, because I talked about it for the first time, I think, like, on a podcast. It's just titled My story. I forget which episode it is, but I noticed for myself, like, speaking slowly, trying to not say anybody's name or not trying to draw too much direction to that time in my life. And the reality is, like, that's my experience, and that's it. Like, I'm just sharing what my experience was. And I notice how I speak from a place of protectiveness whenever, if. If someone were to say something bad about people with herpes or this organization even, right? Like, I don't give a. What you say about. About me. I don't care. But this space is something that I'm very protective of, and I caught a whiff of that. Maybe not the protectiveness necessarily, but a shift in comfort and familiarity when you got to talk about DBT therapy and how someone could benefit from it if they are struggling with their diagnosis.

[B]

Most definitely. You really hit the nail on the head. You know, it's. And you're right. And about, like, who that. Who. You know, it would be a miracle if one client of mine found this episode and then recognized my voice and then found my name.

[A]

What are they gonna do, just ask you about it? Like. Like, that's cool that you were on that podcast. Like, now I want to work with you even more. That. That's. I guess maybe I'm just like a hopeless career romantic or something where we're just. When we are open about things, we're opening up and allowing for connections to come in. Because there was a young man that I had on my podcast who. One of the first men, one of the only men. There's a few men who've been open about the herpes status. Only black man? No, there's one other that I can remember, and he let me use, like, the video and the. We use that for, like, social media posts. And his now girlfriend found him. She thought that it was brave that he talked openly about his diagnosis. She slid his dm. She was bold. And this was actually the podcast episode right before this one. I'm gonna release this one this upcoming week. But I just thought that that was so cool that she boldly slayed in his dms. She was looking for a friend, and then that evolved into a relationship. So there's a lot of things that can happen, and I think that we don't necessarily look at this diagnosis as something that can bring about a positive outcome, but we can't. It can't, y'. All.

[B]

It can.

[A]

And even now, like, I'm watching you smile, like, I called you out in a way and gave it a little bit of my. My own experience, too. And just that's something that I notice on the podcast often, like, people, you know, kind of come out of this shell a little bit. And yeah, I appreciate you for, again, revisiting that and explaining a little bit about DBT too, because I, I. This is. Regardless of how much we talk about herpes and sexual health, there is a lot that goes into the mental health, the emotional wellness, the identity pieces as well. And I want to help people access resources that can be useful to them. So I. People might reach out and be like, hey, I want to work with that person. Right? And, like, I'll tell y', all, like, you, you got a lot more.

[B]

More.

[A]

Like, I think that you are maintaining a professionalism, a level of professionalism. I know we talked about maybe not talking about your personal story with how you got it, and I'm. I'm 100, like, in support of not doing that. But I want to check in with you now. Like, does it feel like, since you opened up, a little bit more, do you want to share that experience? And if not, like, please share whatever else it is that you would like to share with the audience before we transition?

[B]

Probably not.

[A]

That's okay, because.

[B]

Yeah.

[A]

Okay. We can talk about that later if you want to.

[B]

Yeah, yeah, talk about it. But something I did want to say with your observation is, you know, you're definitely right. And I definitely was. I'm in a helping profession, and I'm used to being the helper, not necessarily the client. And it's. It's sometimes difficult to have that switch.

[A]

I'm learning that I've been so. One of the hardest things for me to do, I. I've created an identity around making something positive for positive people, free and accessible to everybody. And I would host support groups. I'd be like, hey, we're having a support group this day, this time, and be consistent with it. Or yoga classes on Tuesdays. Like, I. I try to do these consistent things for free. And it was very rare. More people would register and not show up than people who didn't register and happened to show up. And that was so challenging for me to navigate because it's like, damn, why wouldn't people want to come to this amazing free thing? And I value it tremendously. And I think that it should be something that is free and available and accessible to everyone, Especially if I. I'm not, like, killing myself to make it happen. Over the last couple of months, what I've done is I've started to even support calls, right? People will sign up for the support call, and it's the people who don't donate that don't show up for the support calls. And I was just like, wow, why wouldn't you do that? So now I've made the support calls. Like, you have to make a donation. There's a recommended amount, and if you want to be in the support group, same thing. And I've had the most people attending a support group. I've had the most support calls over the last two months, month and a half, two months than I ever have. And this has been so uncomfortable because I've had to shed the identity of being a giver so freely and accessibly that now, like, I feel like I am maybe having more of an impact and having to lean into. You mentioned the truths, right? Like, I think that you can't charge people for things and be a good person, right? You can charge people for things and be a good person. So as I'm thinking about what you said about the. The multiple truths holding up, and so, yeah, it's been a real challenge for me, but it's also been very rewarding because I do feel like the impact has been more valuable because I recognize, like, people are much more attentive. People read the instructions of the process and they want to make the most out of these calls. And want to get the most out of our time together. And I think that, yeah, this having to shed that identity was a difficult thing for me because my ego was attached to being the hero or helping. Helping everyone and saving everyone. So I resonate when you talk about being in that giver role and then having to be in another space, a different identity, like with the diagnosis, maybe feeling like, damn, now I need support. Why the fuck do I need support? Like, I'm the supporter. I can't be out here needing support.

[B]

Yeah. In. In a nutshell.

[A]

Yeah.

[B]

And I also know, you know, I'm. I know I need to take my own advice as well that, like, don't call me out.

[A]

Don't know. Don't do that. I'm just kidding.

[B]

I'm just kidding that, you know, everyone needs help once in a while. There's no shame in asking for help. And I teach my clients to, to ask for help effectively. You know, I should do the same.

[A]

And I guess the last thing, that's a really good point. Like, last thing that I want to leave us with is like, what are some of the ways or tools that you use in order to teach people to ask for help? Because we, we do need it. Herpes are not like we need each other. And that is a very difficult thing. Like, we think about rejection being hard, as in we ask for something thing, and we're told no in the sense of our sex and sex lives. But when we need help, people are so willing to support us, especially friends, especially people who've proven to be there and consistent in our lives, but we might not take it. What, what advice or guidance do you have for that and asking for help?

[B]

Well, first I think it's. It's knowing what you need. What are you asking for help with? You know, what are your goals and asking for help, what do you. What do you need? What do you want? And then also there's the. Are you asking the. A person that can give you what you need? And, you know, you can't ask, you know, a friend necessarily for medical advice, unless maybe they're a doctor or in the medical profession. And you, you may not get the best information. Asking a friend, same thing you need to see. Is this person capable of giving me what I need? And am I. And when I ask, can I do it in an effective way where it's where I'm fully explaining what I need and the expectations and am I comfortable with getting a no? Because sometimes we do. We do get no. And it's not because we're a bad person. It's not because, you know, necessarily because of this diagnosis. There may be something else going on in this person's life that we know nothing about.

[A]

Yeah. And last thing before we transition out of here is identifying people who are safe to ask for help. I've been saying this thing lately. I don't necessarily believe in safe spaces. I believe in intentional spaces. And I'm working to identify what people can consider to be a safe person. And I'm looking at the nervous system. I'm also looking at consistency and how people show up consistently in a person's life. Yeah, I. I don't know. Like, can you help me with articulating what a safe person can look like to someone?

[B]

I think, yeah. Noticing that they're consistent, that they're reliable, that they are, you know, they. They may not compare completely understand, but they're willing. They're willing to ask for clarification if they don't completely understand. Okay, help me understand rather than I don't understand. So it must not be. It must not be, you know, valid.

[A]

So gratitude and curiosity.

[B]

Yes.

[A]

Oh, man. So this is a good formula for a lot of things because I even talk about how when we deliver, when we tell someone about our diagnosis to meet, to be met with gratitude and curiosity is the best thing you can be met with other than me too. Right. But then even me too can turn into, oh, but I experienced it this way. And then like, just a complete overshadowing of your experience. So, yeah, I think that that is a very. This is a test. This is a really good test for people. If we share with them our diagnosis, we're like, hey, I'm dealing with. This is what I'm going through, like, man. And for somebody to. There's a fine line between curiosity and being nosy. Now, a nosy person is probably going to be like, who'd you get it from? Right. But a person who's curious is going to ask, how are you? They're going to be curious in you and what. What that experience has been like for you and how they can show up and see support you. Right. Making it and keeping it about you and your experience. So I thank you, thank you for sharing presence with me. And I appreciate you giving us the experience that you had and also teaching us about Ellsberg syndrome. E L S B E R G syndrome. And for those who might have missed it, it's a neurological disorder characterized by central, like urinary retention, lower limb weakness, and sensory issues caused by inflammation of the lumbosacral spinal cord and nerve roots, which I think is almost exactly what you said. Typically called by HSV2, but also West Nile virus, CMV, cytomegalovirus, VZV and EBV and acyclovir, Valtrex, valcyclovir, these things treated. So I mentioned. Oh well, yeah, the diagnosis is really just to take the medication like acyclovir, which is beneficial even if the specific viral cause he's not definitely identified. So yeah, thank you. Is there anything else that you want to leave the audience with before I let you go?

[B]

No, I think that's it.

[A]

Amazing. All right, well if you can stay on just for a second so I can check in with you, I'm going to go ahead and close this out. That concludes this episode of Something Positive for Positive People. Please like rate, Review, Share subscribe to this podcast and if you've been, if you've been on the fence about a support group or a one on one support call, just sign up for a one on one support call. Like I, I don't advertise this but like you don't have to donate if you sign up. Like I'll meet with you. But yeah, if you're curious about additional resources and if you want to be part of the support support groups. Now those do require a donation but in order to get into those you have to sign up for one on one support call with me. I have to protect that space so that that's all there is to it. You can go to spfpp.org herpes-support-group I think. But if you go to the page just scroll down, you'll see the options for you to be able to click on December 12th in person event and Brooklyn hit me up about that. And yeah, just if there's anything you need, please don't hesitate to reach out again. I'm Courtney Brain and until next time, stay present.