That is always so loud. Hello welcome to something
positive for positive people. I'm Courtney Brain, something
positive for positive people is A5O1C3, nonprofit organization
supporting people navigating herpes statement and we have
December 12th hour. I'm going to just make it a
karaoke event actually, so December 12th from 5:00 PM to
9:00 PM and then maybe some stuff will be going on
afterwards. We're going to have a karaoke
night in Brooklyn, NY. 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 a 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, 7:30 PM Eastern Time.
The first and third Mondays are for women.
The 2nd and 4th 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, 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 not binary and that's
also listed on the site, but there is a queer film LED group,
queers and films 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 a
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 for that discomfort to go because I know
it can be overwhelming to join a community, a 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 connect it all.
Right, so I am a therapist and I am living with HSV 2.
Yeah, what else about you? You like dogs or cats?
Like, yeah, I know it's more to you than that.
So yeah, so I am an animal lover by especially dogs and yeah, I
love reading, exercising, but mostly, mostly love my job.
Yeah, and what kind of therapist are you?
I specialize in dialectical behavior therapy.
OK DBT. DBT.
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 connect it.
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.
And it's so funny to me that she was just looking for something
uplifting and it was like, I'm looking for something positive.
And then bam, 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 invokes some initial emotion to.
Be honest. Not really.
Really. OK, 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 the,
an organization that, you know, talks about herpes, right?
Because people don't want the 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, 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.
Yeah, I didn't. I think she felt more
uncomfortable than me in sharing it.
Say more. She was very apologetic.
She's like, you know, I wasn't looking for anything.
I just, I just, you know, I happened to take this in and
this is what came up and I thought of you, but like, I'm
not, I'm not cuz she is also a social worker so she's not
trying to stigmatize me in any way either.
OK, OK. 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 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.
So it was. It was interesting.
I was, I, 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 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 healthcare 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 and but eventually came back
from out of town. Went to a doctor and they
eventually they told me some misinformation about herpes,
that it couldn't be spread when it wasn't, when it wasn't, when
you weren't symptomatic and that they didn't really tell me
anything else about. So I didn't because I did so
much research 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 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've 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
kinda, I dismissed it at first, but I was like, hmm, this isn't
how it normally feels. And so of course this is at
night, you know, maybe 9:10 PM. 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 HSV 2. And so understandably, I was
scared and I, 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 in 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 1st and they said that it might be
cauda 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 so or through injuries something like that.
And 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.
So no, you can't have that. When I brought up the topic of
Ellsberg syndrome, they dismissed me even more.
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, he is.
The resident is not hearing me and so they did an MRI as they
have to do with the tidal equina syndrome to rule out anything
structural and they did that. Didn't find anything.
So I waited about 6 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, it shouldn't be.
And since it wasn't necessarily an emergency, I, I understand
the way. And the doctor didn't see me
after the initial assessment. The nurse, 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, 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 well, 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.
So whenever you when you had your outbreak, that was when you
experienced the incontinence. So that was about two weeks
later. Oh, OK.
So it was 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. Yes and they before the 1st the
last gynecologist appointment they actually didn't put me on
anything. So no, no one did.
Even the person that diagnosed me.
So you were just raw dog in this diagnosis, these symptoms?
Yes. OK.
And not really sure where to go, what to do and it's painful.
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 get some type of consequences or
something? 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. You're very patient and OK with
that despite the inconvenience that it caused 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, dismissed you, gave you
misinformation, right? Like how do you have that grace?
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.
Talk to me about this. The doctor told you.
You can't. You're not contagious When you
don't have symptoms, right? Yeah.
So the reason that I'm asking that is because I, I, 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 experience and
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. Yeah.
And, and unfortunately it's, it's a reality this the 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. 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 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.
Oh, all right. I thought you were about to say
something else. I looked at you and 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. Like 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. I know the doctor said that,
that, that, but you had more information and you knew, like,
I want to say like, you know better, but but you challenged
the information that you received.
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?
I don't, I don't think it's anything you know, like.
You can say that like, I don't think it's anything special,
but. I don't think it's anything
special. I think it's it's knowing what
the right thing is. 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 aren't 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, 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 performed, 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 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. That doesn't feel fair.
Why do we have to solve problems that we didn't cause?
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.
Yeah. Is there anything from a therapy
perspective? Right.
Like, I understand that you do have this diagnosis yourself,
but coming from a DPADBT lens, can you apply that to a herpes
diagnosis? Like what could a person with
herpes get out of working with the DBT Dialectic diet?
What? What is it?
Oh, I was right. Dialectic behavioral therapist.
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 2 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.
I noticed something and maybe this is just an observation, but
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, right?
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, 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 of being in
that moment again. But I know I noticed like when I
was asking about how could a personal herpes benefit from
DVT, Like it, it picked up a little bit.
Was there, was there a shift in there for you?
Can you name that? Not so much an emotional shift,
more of a, well, an emotional shift as in I'm nervous right
now. Yeah, talking about it.
Talking about your experience or talking about DBT?
No, no, you're right. Yeah, talking about my
experience because also given that I'm a therapist, it's there
is still Sigma and to. Be honest, I'm.
A little nervous that some clients may find me.
And they find this podcast. 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 going to recognize
your voice with no name, no context except for maybe a
little bit of what you do right. And yeah, I, 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 they're 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 at this point. So it's, it's a lot that goes
into there, 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 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, I think it's
important that I just name that. But I, I caught the, the shift
like I, I felt a shift and 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 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 noticed 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 fuck what
you say 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 DVT therapy
and how someone could benefit from it if they are struggling
with their diagnosis. Most definitely 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.
What are they going to do or 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. He let me use like the video and
the we use it 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 when I'm going to release
this one this upcoming week. But I just thought that that was
so cool that she boldly slayed Miss 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. It can y'all, It can.
And even now, like I'm, I'm watching you smile like I, 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
noticed 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 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 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 if not, like, please
share whatever else it is that you would like to share with the
audience before we transition. Probably not.
That's OK, because yeah. We could talk about that later
if you want to. Yeah, yeah, I'll go by and get
off. 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.
I'm learning that. I've been so one of the hardest
things for me to do, I, 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 to say this time
and be consistent with it or yoga classes on Tuesdays.
Like I I tried 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 happen 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'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 'cause 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
would 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 excessively
that now like I, 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 every 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. Yeah, in in a nutshell, Yeah.
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.
Don't know. Don't do that.
I'm just kidding. I just.
That, you know, everyone needs help once in a while.
There's no shame in asking for help.
And I, I teach my clients to, to ask for help effectively.
You know I should do the same. And I guess elastic, 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 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?
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, you
know, necessarily because of this diagnosis, it there may be
something else going on in this person's life that we know
nothing about. Yeah.
And last thing before we transition out of here is
identifying people who are safe to ask for help.
I 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, I don't know, like can you help me with articulating what a
safe person can look like to someone?
I think, yeah, noticing that they're consistent, that they're
reliable, that they are, you know, they they may not
completely understand, but they're willing, they're willing
to ask for clarification if they don't completely understand.
OK, help me understand rather than I don't understand.
So it must not be. It must not be, you know, valid.
So gratitude and curiosity, 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, 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. 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 support you, right, making it
and keeping it about you and your experience.
So I thank you, thank you for sharing presents with me and I
appreciate you giving us the experience that you had and also
teaching us about Ellsberg syndrome, ELSBERG syndrome.
And for those who might have missed it, it's a neurological
disorder characterized by symptoms 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 HSV 2, 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 is not
definitely identified. So, yeah.
Thank you. Is there anything else that you
want to leave the audience with before I let you go?
No, I think that's it. 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 is
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 one-on-one support call, just sign up for
one-on-one support call. Like I, I don't advertise this,
but like you don't have to donate if you're signed 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 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
Dash support dash 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.
All right, from December 12th in person event in 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 till next time, stay present.