Unpacking: Pain among Sexual Minority Youth and Young Adults

Ian: 00:00:00

LGBT individuals tend to steer away from health care settings oftentimes, and it tends to have something to do with feeling marginalized or even stigmatized within healthcare by providers.

This can be due to a range of things, from subtleties like microaggressions to flagrant discriminatory behaviors by clinicians, whether it's unbeknownst to them or intentional.

And so there's often, for example, overt misgendering that happens if you go to a clinic and you are a female to male transgender individual and your birth name, name given to you at birth was Sally and now it's Sam and they call you Sally in front of the entire patient population waiting for their appointments. And now you have to get up and stand there as if you were this, like, sideshow.

Intro: 00:01:04

Welcome to Unpacking Pain, a podcast dedicated to understanding the complexities of chronic pain, what causes it, how it affects our lives, and what we can do about it.

Join doctor of physical therapy and pain science researcher, Dr. Megan Stacy Steele, and me, Holly Osborne, a chronic pain sufferer, as together we explore the biological, psychological and social aspects of chronic pain and create community and understanding in the process.

Megan: 00:01:39

Welcome to a very special Pride Month episode of the Unpacking Pain podcast. Today we have a special guest, Ian Lane. Oh, Holly's showing her shirt in case you're watching online. And I have my. Well,.

Holly: 00:01:58

Don't rain on my.

Megan: 00:02:01

I have my umbrella. And today this is really honor. In honor of Pride Month, certainly.

But it's also in honor of our Special guest today, Dr. Ian Lane, who holds a nursing license and a Ph.D. and I want to just jump right in and find out, Ian, how you got into this line of research. I assume at some point you were working as an rn, and how did you decide to make the transition? Give us your origin story.

Ian: 00:02:32

When I had worked as a nurse, I got interested in pain like many of us do.

Pain management is a core aspect of nursing care, and I was very intrigued by why some people had greater or lesser levels of pain, disparate pain levels, and then who went on to develop chronic or persistent pain versus those who did not.

And, you know, why was it the case that some people had, for example, the exact same surgical procedure or what have you, and then led to some individuals developing persistent symptoms and pain? In some people, people didn't have any. It striked. It struck me that the biology is pretty much identical.

There's something else going on there, and I was very intrigued by what that something could possibly be.

Holly: 00:03:20

That was a whole episode for us. I Wasn't we were the tale of two surgeries.

Megan: 00:03:24

Yes.

Holly: 00:03:25

Like same surgery, same time, injured. Why don't different outcomes. Yeah, we're with you, Ian. Fascinating.

Megan: 00:03:32

And Holly, you know that from the multiple surgeries that you've had, you've had, is it eight or nine surgeries on the same shoulder?

Holly: 00:03:39

Eight now. And some of them were the exact same surgery, Ian. So it'd be like one surgery failed, then they went back in again, it was successful the next time.

So, yeah, I'm, I'm very. I understand why you're so curious about this. We are too.

Ian: 00:03:53

Yeah. So then I worked through my graduate degree and my interests personally in research. I was boring Megan with this on my podcast yesterday.

Is really in statistical methodology and the application of research design to clinical questions. And I was all set to do a kind of validation, a study doing a measurement development and things like this.

And I thoroughly enjoy that kind of nerdy statistical stuff. But I started to see pain assessments and kind of the psychometrics of pain scales and things like that.

And I started to delve into this area a little bit.

And just by happenstance, I ran across an article one day looking at migraine headaches in sexual minority males and found that there was a pretty significant discrepancy between CIS heterosexual males and sexual minority males for headache, specifically for migraine. And as a young gay man who has migraine, I thought, you know, my first thought was, that's interesting. This could be something.

And my second thought as a researcher was, well, I don't want to bias myself. I'm part of this community. This could just be, you know, a happenstance finding. It's a one off. And I started to see.

I started to see more and more of these publications coming out, and I started to realize that as population level studies emerged with significant numbers of participants showing the same types of findings, discrepancies from 40 to 140%, greater rates of pain depending on the area, and not just with headache. Musculoskeletal pain, persistent pelvic and abdominal pain, lots of different types of pain conditions.

There's a significant disparity in pain in this community. And at the time, we did not know why.

And we have our suspicions why, which we can talk about, but we still don't have enough evidence on this population. So that's what really sparked my interest in this and what made me the gay paying guy.

Megan: 00:06:00

Which is your Instagram handle, right?

Ian: 00:06:02

It is.

Holly: 00:06:03

That's. That's so interesting. I mean, I wanted to say before the conversation even really gets into the details of it.

Thank you for bringing this to our audience. I mean, this is powerful. Thank you for doing this work.

Thank you for representing an underrepresented population, especially in something that, you know, on top of the other challenges, should not be dealing with pain at a disproportionate level. That's just so. I'm really impressed with what you're doing. So. Okay, I'll start. Megan will have the smart questions, I'll have the dumb questions.

Megan: 00:06:38

There's no stupid questions.

Holly: 00:06:42

Tell us a little bit about what kinds of treatment typically seem to be sought out by members of this community who find themselves in pain.

Do they tend to go, you know, do they tend to just sort of grin and bear it for a long time and then go to a primary care doctor, or what's the trajectory like?

And do you find that physical therapy is making a difference, or is there a modality that seems to be making an impact on what this community is experiencing?

Ian: 00:07:12

So, Holly, I'm smiling because I agree with Megan here. That is absolutely not a dumb question.

That is a very smart question, and I. I particularly appreciate that because unfortunately, a great number of sexual and gender minorities, or what I will refer to from here on out as the LGBT community members, which is essentially the same thing. We use them interchangeably. NIH likes sexual and gender minorities for some reason. Okay.

But LGBT individuals tend to steer away from healthcare settings oftentimes, and it tends to have something to do with feeling marginalized or even stigmatized within healthcare by providers.

This can be due to a range of things, from subtleties like microaggressions to flagrant discriminatory behaviors by clinicians, whether it's unbeknownst to them or intentional. And so they're. There's often, for example, overt misgendering that happens.

You know, if you go to a clinic and you are a female to male transgender individual, and your birth name, name given to you at birth was Sally, and now it's Sam, and they call you Sally in front of the entire patient population waiting for their appointments, and now you have to get up and stand there as if you were this, like, sideshow. A lot of people feel that they're out of place and that the practice is out of touch.

And so that may be a long winded way of kind of addressing this, which is to say a lot of them don't seek out care at all and go and kind of suffer and grin and bear it. To your earlier point, wow.

Holly: 00:09:00

I mean, I. Not a long winded point. We're hanging on your every word. That's really sad to hear.

And I can immediately picture that scenario just make you never want to go back.

Megan: 00:09:13

Yeah. And Holly and I have talked in the past on this podcast about chronic and complex pain having a lot to do with threat detection.

And so kind of that scenario that you just gave us is someone dead? Naming me or making me a sideshow? That can be a threatening experience for someone in this situation.

Ian: 00:09:41

Absolutely. I would like to make a quick plug.

l, and I published a paper in: 2024

And we also interviewed their care providers, their parents, for example, or their guardians. And we asked a lot of questions about their pain experiences in treatment.

And many of them actually describe scenarios where this misgendering immediately made that threat detection system fire for them. And some describe it actually activating pain for them in the ensuing days and weeks.

So there is some evidence for that now that we've actually published.

Megan: 00:10:41

I've seen that clinically. I had someone that was making really great progress and went to an event and was misgendered.

And the flare that happened in the neck and head, I remember it like it was yesterday. It was, you know, it was that three to five steps back.

And it can be so disheartening for someone that's feeling like they're making progress and that they're feeling seen by their provider. And, yeah, it can be. I've seen it in real time. That it does have a direct physical impact.

Holly: 00:11:17

Is there a way that an LGBTQ community member could identify a potential provider who would be friendly?

You know, I. I don't even want to say friendly, because that makes me so angry that, you know, there would even be the opposite or the absence of that. But that might be attuned to all kinds of underrepresented populations and, you know, would be friendly to LGBTQ plus community.

Like, is there a marker?

And Dr. Megan, I know you have that database that helps people find a physical therapist anywhere and a specialization, like, is that a flag that we could start, you know, adding to databases?

So, first, Ian, you know, like, have you ever seen any way for the community to help identify, like, okay, this is a safe harbor, or this is a doctor who's known for being, you know, tapped in.

Ian: 00:12:08

There are some practices that are explicitly focused on LGBT health. And so, for example, in my area in Rhode island, we have, I think it's called Thunder Mist.

In Massachusetts, there's the, the Fenway Clinic near Boston Commonwealth.

There are some places that specialize in that, but lots of LGBT community members live nowhere near these areas and don't have access to these types of specialized or sub specialized care settings. So it's a great question.

Unfortunately, it's complex because it's possible that there might need to be some kind of an external signal, by which I mean, some clinics might need to actually have some kind of insignia telling people that you are safe here because you can't really look at somebody and determine if they're going to be friendly or not. Some people feel that sense of openness with someone that they meet, but it actually requires them to meet them to find that out.

And so there are barriers before you even get to the point of meeting them. Does the website have an inviting, LGBTQ friendly seeming atmosphere to it? Are there any insignias anywhere that would indicate that they're open?

Is there any writing on the site that indicates that they're open to all people? Or is the description of the clinic such that it kind of screams like heterotypical or heteronormative environment?

And it's difficult because some clinics are very open and tolerant and they just don't know how to market themselves to the community.

I saw a brilliant post, because it is pride month in June, from somebody about how putting a little flag somewhere actually is beneficial for this community, because otherwise we don't often have a good way of judging or gauging whether it's going to be a safe environment until we get there. And that does prevent a lot of us from seeking that care.

Megan: 00:14:14

Yeah, absolutely.

And I think, you know, having some kind of a sticker on the door, whether it be, you know, a rainbow flag or transgender flag or everyone is welcome here type of information. I've heard of clinicians, you know, wearing pins on their white coat or having a watch band that just kind of gives a visual signal.

And you can see people, you know, you can almost see their nervous system take a deep breath. I think that is really important, aside from using your words.

And, you know, my intake forms ask about pronouns, because I want to know and I want to get that right on day one. Right. I don't want you to have to correct me and have that experience.

And I think that kind of goes to another question that I have for you, Ian, which Is, do you think that as someone who is, I guess, heteronormative, I don't know if that's appropriate language.

Do you think that I am the best person to treat someone who is of the, of the LGBTQ community or sexual and gender minority, or would they be better off with someone who has a personal understanding of that?

Ian: 00:15:34

I. Yeah, I agree. I think that's a great question. I think it's also a complicated question, right, because to a degree, representation is incredibly important.

And if you can see yourself and your provider, there are benefits to that.

On the other hand, if you can only see somebody who has the exact same identity as you and the same pain condition as you, and, you know, that becomes a, a complete barrier unto itself, and there are not enough lgbtq, LGBT providers or clinicians available to kind of fill that need. I think educating clinicians is kind of the first step.

And I think there's only one Megan Steele who's going to be the expert in visceral manual therapy for somebody who needs it. And if Megan Steele can be that expert and also be inviting and open and collaborative, and I think that that's perfectly acceptable.

And it's also an evolving relationship that you'll have with these patients too, where you'll get a sense from them and you'll want to adjust and adapt to them and vice versa as needed. What I think some people fall into the trap of, is you mentioned your intake forms, and we often talk about the biopsychosocial model.

And there are biological, psychological, and social factors that influence pain. There are also structural factors that feed back into that same system.

And the intake form is a beautiful example of a structural component that influences the psychosocial inputs of that patient. And I mean, lots of clinicians and practices do not modify their intake forms in an inclusive way. So you're already ahead of the game there.

But some LGBT people end up having to educate the providers, and that gets exhausting for that individual. And so just by being an educated, informed provider, you're already 10 steps ahead, in my view.

Holly: 00:17:45

You mentioned the biopsychosocial model, which Megan knows is my favorite. Like, I want that tattoo only just because as a long term pain sufferer who's.

Every provider was always like, the biology, this, the biology, this, the biology. I'm like, pay attention to these other things, please.

I'm curious about that third leg, that social aspect, and I'm curious if any research has been done or if you think it's needed to understand whether there could be some factors at Play around the lack, potential, potential lack of familial support for an individual who has maybe grown up not feeling accepted in their family, maybe not feeling that they saw a lot of representation around them. And the extent or the proportion.

I'm just curious if there's any correlation between someone who's felt unstable, supported socially in the LGBT community versus someone who was very much supported, you know, and if they have divergent paths, you know, in terms of pain experience.

Ian: 00:18:54

There are a number of qualitative studies now that ask questions to, for example, LGBT youth about the influence of sort of their parents, acceptance of their gender identity, as one example.

And you can make the extrapolation that it applies to their sexual identity as well, and how it influences their pain or the course of their pain trajectory. And those data, I think, are crucial for hypothesis generation, but they're not enough to kind of base.

We wouldn't change practice over these studies. We need higher order quantitative population level studies that look at these very factors that you mentioned.

And we have some limited data on, for example, adverse childhood experiences, which is different, but relating to things like parental rejection or parental assault. And those are very strongly correlated with high rates of pain, specifically in gender minority youth and sexual minority youth.

But there are a host of factors that you indicate, such as parental and peer rejection. You know, does your mother or your father or your sister, your brother or whoever accept you for who you are?

Do you see yourself represented amongst any of your other family members or anyone else in your social group? Those factors have not been studied systematically yet, which is something that I would like to do because I think they're crucial.

And as much as they're needed, there are some folks out there who are also interested in these things. Dr. Lauren Harrison is another pain scientist. She's a pain psychologist, actually, who's interested in this.

But a lot of this work is really in its infancy still, so I think it's a poignant question. That's exactly the direction we need to go in. And I often tell people that, especially when it comes to sexual minority status, for example.

And for those who don't know, when I say sexual minority, I mean anyone who has a non heterosexual sexual identity.

So if you're gay, lesbian, bisexual, pansexual, these types of things where you have any kind of a same sex attraction anywhere on the spectrum, there's a term floating around in the pain science community called mostly heterosexual, which really just amounts to like you have some level of plurisexuality beyond the opposite sex. There's a really high rate of pain in those individuals who identify as plurisexual. Oh, interesting, right, Exactly.

And unlike somebody, for example, who identifies as a gender minority, who might or might not be taking hormone therapy, gender affirming hormones, that individual. There's a direct biological link there. It's more complex than that.

It's not just the biology at all, but there's a biological component that's being influenced.

But for the sexual minority individual, there's nothing innately biologically different for those individuals, but there's a significantly higher rate of pain. For example, in sexual minority females, there is a 140% greater rate of musculoskeletal pain and a 50 to 200% greater rate of pelvic pain.

And if there's nothing intrinsically, biologically different, what would influence the transcriptome profile for that person to experience more inflammation over the years, for example?

And I think some of those things are identity concealment and psychological distress related to stigmatization and these things that we call minority stressors. So to your point, I think these social factors are really key.

Megan: 00:22:49

You know, from my end of the research, when people have a lack of social support that's also quite highly correlated with chronic and persistent pain states. And if I don't have that support from my primary caregiver, it stands to reason that. That I would be more likely to experience that.

That chronic pain.

Ian: 00:23:15

Yeah, absolutely.

Holly: 00:23:17

Like, I'm wondering too, about age, like. Well, it came to mind because I'm wondering how early the pain might start showing up for an individual.

If it starts showing up earlier, perhaps, you know, as you mentioned, that it can kind of ride alongside a sense of reject, you know, the experience of rejection or an ACE within their childhood or what have you.

I'd be curious to know if persistent pain maybe shows up even earlier in age among the LGBTQ population, or if it's the kind of thing where it's like the opposite. It shows up later because this is not a community that will rush to the doctor. You know, like, they.

They maybe want to avoid, like, you for some of the reasons that you named.

Ian: 00:24:12

I think there's a. There's a little of both of that happening, to be honest.

There are some studies that look specifically at youth under the age of 12 years old, some that look in that young adult range, as we've done in our groups, and there is a higher rate of pain, even amongst adolescents, for example.

Okay, what you're touching on, and as a research methodologist, something I'm particularly interested in is the lack of what we call in research longitudinal data. And what that means is you're collecting data at more than two time points across a continuum of time.

And so a lot of this research is cross sectional, which is just like a snapshot in time with one survey, or looking at a data set that exists and drawing some correlations between an existing data set. But there's not a lot of research that looks at the actual trajectory yet.

And that would be another crucially important area of research for paying scientists that might be listening.

Looking at the trajectory over time and these factors that you've mentioned, psychological, biological, social factors, structural factors, and how they relate to that pain across the course of time, Very much needed. That's another core area of interest for me as someone who's interested in modeling time varying covariates and things like that.

Not to get too nerdy for the population of people who listen to this podcast, but for those people who might be interested in the research, that's a key area that's missing.

And you can imagine as a clinician, if you're listening and maybe you don't care so much about the, the nitty gritty of the research methodology, but if you think about the person in front of you, to Holly's point, they have a history and that history connects along the course of time.

But we have no idea how some of those factors play into their current pain state and then what you do for that pain and how it continues to relate to that pain trajectory over time clinically. So these longitudinal studies are going to be very much needed.

Holly: 00:26:16

Listen up, potential, whoever's out there that can sponsor this, I mean, not the podcast, I mean Dr. Lane's research,.

Megan: 00:26:24

I would love to. And keep going.

Yeah, I mean, I just want to say a little blessing for anyone who's doing longitudinal research, because when you think about like number one, the recruitment, number two, maintaining the recruitment, retention, you know, longitudinal research is some of the toughest there is out there when you're dealing with human subjects, when you're dealing with any subjects. And so, yeah, it's so interesting and so needed and I would love to be involved in it.

And I would love to be involved with people who are involved in it. I would love to see it from a distance also and just be proud of the people who are doing it and not be involved in it personally.

Well, when I think about longitudinal studies about pain, I think about amygdala development.

And so what I understand from the research is there's that critical time period between two to three years Old, where your primary safety signaling, CO regulation comes from your parent. And then I also think about that time in adolescence. Right.

11 To 13, somewhere around there, where your primary CO regulation safety signaling comes from the peers.

So I imagine that some studies, if they haven't been done yet, ideally would be done with those two populations of how was your early childhood and then how was your adolescent time period in terms of did you get what you needed from either the parent or. Or the peers? Do you know. Do you know of any research around that?

Ian: 00:28:09

So there's a lot of research in the behavioral health space on this idea of how that time period, particularly the. The period during toddlerhood that you mentioned where the amygdala formation is developing, and this is critical for attachment formation.

And there's a lot of behavioral health research on attachment.

And then, of course, there are some correlations between anxious attachment styles that are developed that now correlate with levels of emotional stability or instability or neuroticism, as it's called in the psychometric literature. And high levels of sensitivity to negative emotion can correlate with pain in.

And so there is a series of steps that are kind of extrapolated from these data to get to the real question, the meat of the question that you're asking. And again, it ties back to the need for more longitudinal research because we just don't. We don't have it, particularly in this population.

But, yeah, I think it's a. It's a poignant question. As always, Megan.

I feel badly, too, because I know that a big part of this conversation is just me being like, that's a great question. We need more research on that. And we just feel like I say.

Megan: 00:29:28

That all the time. Yeah, yeah, exactly. But especially in this patient population. Right.

Like, you cannot say that a heteronormative woman has the same experience as a trans woman. And so. Right. We just can't take the research from here and apply it here because those are just such wildly different experiences.

Ian: 00:29:57

Right.

And you mentioned you touched on the idea of adolescence and early adulthood, and you kind of chunked it out based on, you know, the toddler ages and the adolescent ages. And this is one of the reasons why I'm very interested in the young adult population.

And young adults can vary in the research, but typically we think of that as like, 18 to 26 years old somewhere in that range. Some people think of it as 18 to 30, 16 to 25. Basically, it's that.

That age range where you are entering, maybe you're getting out of high School and going to college, maybe you're entering the workforce. You know, you're entering the development of new stages of relationship formation with other people of the opposite sex or the same sex.

And you can imagine all the different social dynamics that are at play that differ for a sexual and gender minority or an LGBT person compared to a heterosexual person or a cisgender person. And so I think that these are going to be areas we're going to see a lot of really, really interesting data emerge in the coming five or six years.

Megan: 00:31:03

Yeah. Wow. Well, as someone who just got out of young adolescence herself. Not really. Yeah, I can relate. No, yeah, that.

That is a really interesting patient population. And it makes me think about also the buffering effect of. I believe it's two adults.

If you have two adults in your life at adolescence or through adolescence, that serves as a buffer.

Even if you've had, you know, a tremendous number of adverse childhood experiences or if you live in a disadvantaged community, I imagine that's pretty similar with the LGBTQ population. If that research has been done yet.

Ian: 00:31:52

I believe that it has, but not within the context of pain, but just in the context of social support.

There is a good amount of evidence that social support is a critical factor for mitigating all sorts of different negative effects of ACEs or adverse childhood experiences. It would be very interesting to see some of these things, or what we call, as epidemiologists, protective factors looked at for pain specifically.

And we often.

And you've probably seen this yourself, at the very least in the clinical work, but in the clinical research that you've done during your PhD training, we often think so negatively, and there's this pervasive negativity about pain and sucks, you know?

Megan: 00:32:37

Yes.

Ian: 00:32:38

But there are. There are definitely ways of shifting the kind of looking glass to think about the positive.

And I don't mean, like, the silver lining about being in pain. I mean, like, positive social factors that can reduce pain experiences or reduce pain.

Interference with tasks that are important to you or with hobbies that are important to you, reduce pain, burden, and suffering from pain. Even if the overall pain score doesn't drop to zero, we are still looking for ways to improve quality of life, particularly.

And I think social support is one big one. And there are other protective factors I think that are going to be important to look at as well.

Megan: 00:33:25

Absolutely. Yeah. It can be very doom and gloom, and people are like, gosh, is there any good news here?

And, you know, usually I save social support for, like, okay, we've talked about negative, negative, negative, negative, Negative. Let's talk about social support, let's talk about time spent in nature.

You know, there are, there are certain things that we have pretty solid evidence on that show us that these have buffering effects or positive effects on someone's pain experience. And prayer being another one, cannabis use being the other one that comes to mind. But yeah, it can be really challenging.

And so I wonder about how you navigate that with your teaching or your clinical experience in talking to other professionals, whether they be nurses or other professionals about chronic pain.

Ian: 00:34:28

That's a great question. It's interesting for me because most of what I teach is research design and the basic statistics.

So it's not often that I teach like pain specific in the college classroom. However, I do teach pain clinically to clinical nurses at the bedside. And this is more acute pain related.

And so I'm extrapolating a little bit to chronic pain. But I think you'll appreciate I frequently rely on examples of reducing pain in non pharmacological ways that are very much in this positive space.

And when I teach nurses about how to engage with these positive non pharmaceutical interventions, you know, when I say non pharmaceutical interventions, people think of like PT and we have great PTs in the hospital and they do wonderful work. But I'm thinking more of like things that you as the nurse can do at the bedside or even that can be offloaded by loved ones or family members.

Like I had a patient who I talked about on Instagram one time without providing details about that individual that might identify them. But this person had had a major abdominal surgery and afterward had had severe, severe pain.

And they were on like 2mg per kg per hour of fentanyl, which is a humongous continuous drip.

Megan: 00:35:53

Wow.

Ian: 00:35:54

It's a max dose really. And their pain was consistently at like an 8. And I was able to give IV Tylenol, which can bring it down a little bit, but not that much.

And pharmacologically they were getting everything they could possibly get.

And I would come into the room and I would talk to the nurse and help them and I would talk to the patient and then I'd go to leave and they would grab from my hand and say, mister, don't leave, please don't leave me.

And I would stay there for a minute and he would rub my arm or my hand and then I'd watch his vital signs come down and I would ask him, you know, what is your pain now? And he would say like, it's still like a six or seven.

Oh, it was an eight or nine, five minutes before, before we had this hand to hand contact and this emotional social support moment. And that's an example of this positive social interaction, this kind of protective factor that reduces pain in the moment.

That has nothing to do with drugs. It has, has something to do with biology, but it's the social interaction affecting biology. It's, it's that biopsychosocial model in action.

And I think this applies to chronic pain as well. It's, it's a different context, but I think there's a similar mechanism at play there.

A lot of your students, I'm sure, are hearing about this in class from you, but a lot of your listeners might be hearing this too, that there's this top down descending pathway, we call it in pain neuroscience. Right.

This top down influence to dampen the pain, kind of the pain response that is active in those acute pain moments but is similarly activated in the context of chronic pain when emotions are better regulated, when stress is relieved or reduced, that feedback occurs there as well. So I think those are some protective factors to at least consider.

Megan: 00:37:46

Yeah, absolutely.

And it reminds me of the research that they've done with people where they give them a pain experience and they have, you know, a loved one in the room and their pain perception is lower. And then they did it with just a picture of the loved one, the pain perception is lower.

And then they said, okay, well let's see what a stranger does. The pain perception was lower. To me that was just like, you know, like a stranger, like you don't know this person from whoever, you know.

I thought that was really exciting research. And it really does go back to the fact that we are social creatures. We are mammals that need other mammals to survive.

And somewhere deep in that subconscious, our nervous system knows that.

Ian: 00:38:32

I think, yeah, I completely agree.

Our nervous systems are designed to be connected amongst one another and things go awry when we're not and they go awry when that social interaction is strained or stressed.

Megan: 00:38:49

Definitely, yeah. And so when you're talking about nursing at the bedside.

I worked in the hospital as an exercise physiologist for a few years before I went to PT school. And I wonder. I have very strong feelings about the fifth vital sign. I'm curious to know how you feel about, about it.

And maybe we should probably define that for our listeners.

Ian: 00:39:11

Sure.

So vital signs are basically signs that an individual's body will give, that they're essentially functioning, their organ systems are functioning properly. They're in a state of relative health. So these are temperature do you have a fever? Do you have hypothermia?

Is your temperature in a regular normal range? Your heart rate, your respiratory rate?

These things we look at when you go into the doctor's office and the nurse comes by or the tech comes by and they take your vitals, your blood pressure, things like that. Pain is considered the fifth vital sign.

It's taught that a lot in nursing, and I don't know that I have particularly strong views about its inclusion. I know, I know some physicians who disagree with the fact that it should be included as a fifth vital sign.

As someone who cares deeply about pain and pain experiences in people, I'm inclined to say that I think it's important to at least consider as a vital sign, because when it's not treated as such, it doesn't get considered. I think that's where I would land on this. I think I'm thinking about this in real time with you now.

Me and I've worked in both acute and ambulatory settings in pain.

In the critical care unit, for example, if I, as the nurse or my team, as the nursing team caring directly for patients, do not factor it in as part of our set of vital signs, then the medical team often doesn't actually factor it in themselves. And it's not for lack of care.

It's because there are life or limb threatening conditions at play for them that they're also trying to work into the equation. And the patient's suffering or comfort is on a lower part of the totem pole for them.

Megan: 00:41:17

Yeah, interesting. Yeah.

So the reason I think about it is some of the correlational studies around when the fifth vital sign was introduced, and it kind of correlates with the rise of some of the opioid epidemic somewhere in the 90s. And so part of the thinking there, and correct me if I'm wrong, was, okay, we're constantly redirecting people, how's your pain? Where's your pain?

What's your pain? What's the number? What's the number? Where's your pain? How's your pain? What's your pain?

And so we as clinicians, as physical therapy clinicians are taught now, not when I went to school, but a little bit later, are taught, you know, get the pain number at the beginning, but every session, you don't need to be redirecting people back to their pain. They're aware of it, they're going to tell you if it changes. It's not something that we need to be constantly redirecting back to.

We need to be talking about these other aspects of life that, or, or quality of life, as you mentioned, that may be changing along the person's continuum of care rather than the number. The number. The number. The number. The number.

Ian: 00:42:34

Yeah. So I have two things to say to that, and I would be interested in your thoughts on this.

One thing would be this is a good area to discern between acute and chronic pain.

Megan: 00:42:44

Right.

Ian: 00:42:45

Because in the context of chronic pain, to your point, people, they know their pain, they know it intimately, and they don't often have to have you redirect them back because it's at the forefront of their mind a lot of the time. And if it's not, maybe it should not be at the forefront of their mind.

And a lot of the time the question is really should be centered around, like, how are you functioning despite that pain? Is that pain interfering with things you actually want to do? Are you able to pick up your grandchild?

Are you able to go to the grocery store and stand in line without pain? And I mean, it's really more of a functional characteristic.

The pain scale, and this is what I teach my nurses as well, is it's important in context, but it's limited and it can only give you a very crude sense of someone's actual experience with pain, particularly with chronic pain. And so for those listening, you probably already all know what chronic pain is. You're interested in these podcasts for a reason.

But when we think of chronic pain, we think of tissues that have long healed. And these are pain conditions that last longer than three months and oftentimes far longer than that, sometimes for years and years.

And in the acute inpatient setting, acute pain is in a much more condensed window. It's usually following surgery or following a traumatic incident or when the tissues are actually damaged.

And I think there's a difference there that's important. Before this podcast, I mistakenly ate a chip with salsa that got lodged in my gums. And they are continuing have. I don't know who.

If you've had that experience before, why do they make them daggers?

Megan: 00:44:31

Megan?

Ian: 00:44:31

I don't know.

Megan: 00:44:32

It's just not necessary, right?

Ian: 00:44:35

It, to me, it feels homophobic. It's June. No, but it's.

It's funny though, because it is very much an ever present sensation for me that I have this little tiny, sharp piece of chip lodged in my gum and my body's telling me, hey, there's something wrong here. That's acute pain.

Yeah, it's minor, minor pain, but that's acute pain because there's actively A tissue that is damaged, it's inflamed, it's sending nociceptive signals to my brain. And my brain is saying, hey, there's something going on here, but in three months, I should not be experiencing this pain.

That would be, I think, a different, There has to be a different level of assessing a patient at that point in time compared to the acute inpatient setting. And some of these things like the fifth vital sign and a lot of this, a lot of pain treatment. I think never.

There was never a transition for pain assessment and pain treatment from this acute to chronic stage. I don't know if that resonates with you, but I would love your thoughts on that too.

Megan: 00:45:41

Absolutely. And, and I agree.

And I think where the 0 to 10 pain scale is almost irrelevant is with people who are coming in, like, for example, with an endometriosis surgery. So I'm coming in with this chronic pain state.

I have surgery or I think of, you know, so often patients say to me, after a hip replacement, yeah, I'm in pain, but it's nowhere near what I was in when I, you know, before surgery. And so those kind of acute on chronic exacerbations of pain are, you know, we just don't get a really good. We don't get good info.

I mean, you don't get good info from a 0 to 10 pain scale, in my opinion, anyways, because you're objectifying a subject. You know, it's a proxy. Right. And we sort of write it as if it were gospel. And I don't know why I have so many biblical references today.

This is very unlikely.

Ian: 00:46:45

Seems apropos to me.

Megan: 00:46:48

I have no idea.

But yeah, we sort of like, take this as, as, you know, these are facts when we're sort of saying like, well, this is giving us some information, but likely not. And even less with someone who's experienced chronic pain for a long time.

I think about when I was first training as a physical therapist and, and we were taught kind of, oh, if someone says 10 out of 10 pain, you are to put your pen down. Yes. We were still writing in charts at that time. So you. How young I am.

You are to put your pen down and stop your subjective exam and say to that person, if it truly is 10 out of 10 pain, I need to stop what we're doing and I need to call the ambulance because that's emergency room level pain. Which. How condescending. If someone said that to me, I might smack them across the face.

Ian: 00:47:43

Yes, yes.

Megan: 00:47:45

Yeah. And so really now, when someone says to me, 10 out of 10 pain.

My first thought is, this person hasn't been believed and they need to convince me that this is real and this is really happening for them. But I'm afraid that there are clinicians out there that are still doing this. Hands on hips, wagging of fingers.

Ian: 00:48:07

Right, they are.

I mean, there, there are still clinicians that will leave the room and then talk outside the room in the hospital setting about patients, where the patients and the families of the patient can hear.

And then, you know, if you're in the outpatient setting, it's ambulatory, chronic, you might be communicating with colleagues that in such a way that people who are not that particular patient can overhear and then they internalize that too, like, oh, they're not going to believe me when I tell them my pain either. It's just bad practice. And it's part and parcel of why I think people experience disparities in pain anyway.

This feeling of not being believed or being dismissed, and it's rampant in the LGBT community, not being believed, not only for your pain, but it's almost this like double discrimination because you're not being believed because of your self described pain level, but you're also not being believed in your personal identity and self identification. And there's this compounding effect there.

So I do think broadly we should be more inclusive and more accepting of patients self described experiences with pain because it's their body. But I think to your point, Megan, from earlier, like how that pain influences their function and I mean, these are really important questions.

They experience that pain as a 10, but they're also, they made it to the office to see you and they're able to describe it and talk. And so it might actually feel like a 10 for them, or they might just need you to think that it's a 10 for them. Either way, they're there.

They don't need to go to the hospital.

Megan: 00:49:57

Either way, it's a 10. Yeah, exactly. And. And I don't need to have a judgment about it or.

Yeah, and I love that you said that, because I think something I hear so often in my practice is, you know, my pain hasn't changed dramatically, but my life is starting to expand and that's when my little heart goes pitter pat. I don't know if you experienced that, Holly, with your journey that you went on with your shoulder.

Holly: 00:50:25

Yeah, I mean, most recently there was operation or project Ponytail, which I said to my physical therapist. I know that after this number of surgeries and this many, you know, the prosthesis, it's just. It's not going to be a, quote, unquote, normal arm.

But what I'd really love at the end of this is to be able to put a ponytail in. And I showed him the contortions that I do in order to attempt a ponytail, and he's like, all right, let's fix that.

And so, you know, it was a really big deal to put in a ponytail, you know, but it occurs to me also this sort of the comfort level that someone like me who hasn't faced this kind of discrimination, like, I've got this comfort level and a privilege to be able to joke around with a practitioner and to be cutesy and say, project Ponytail. What if a transgender female was like, project ponytail?

You know, that might really be too vulnerable, and they may not feel like they can get to that level.

And I don't know if, Ian, this has come into play, but, you know, forgive me if I'm treading over already worn territory here, but we have enough trouble, really, sometimes getting a practitioner just to listen to us and to actually, we have to become our own patient advocate. And sometimes you have to even exaggerate just to be seen or to, you know, they're offering you an appointment that's four months out.

I'm wondering if. If members of this community feel often that they can't be the squeaky wheel.

They don't have permission socially to be the pushy one or the jokey one.

You know, whether I'm trying to win over a stiff, you know, unfeeling doctor with some humor, or I'm getting pushy because I feel that, you know, scheduling is jerking me around. You know, I'll. I'll push on that.

And I'm wondering if you could talk to the experience that LGBTQ people might feel like they don't have the permission to push as hard or jump in there and say, hey, I'm going to grab the bull by the horns here. And, you know, do you hear about that anecdotally, at least, if not in, you know, quantitative studies?

Ian: 00:52:54

Certainly.

And I think just by dint of being somebody who identifies as lgbt, there is a certain level of apprehension that you have entering a clinical relationship. And even as.

I mean, even as a healthcare provider myself, and I mean, I have a PhD and I go into healthcare settings, and I think to myself, like, how am I going to articulate myself in a way that's going to help them, believe me, without having to rely on my authority or my credentials? And right and it can be tough.

And so, you know, I think you make a really good point about the trans woman who comes in and they're trying to grow their hair out and they're trying to make their external body feel like their internal sense of self. And there's this whole concept of belonging wrapped up in their pain experience.

And they may not feel as comfortable broaching Project Ponytail with their pain provider or their physical therapist or their physician or whoever compared to a cisgender woman, because the cisgender woman is automatically accepted as female, as a woman at face value. And now what I do see a lot of are individuals in this community who develop a defense mechanism in one way or another.

And there are two that come to mind immediately. One is when somebody gets overly defensive and they instantly get irritated or aggravated or irate in a way that puts the provider on edge.

But they're trying to advocate for themselves, but it comes off as anger. And it's a protective self defense type of moment that that person gets into.

And it often has nothing to do with like how they generally are, except that when they feel threatened, they go into self defense mode. But that can shut a provider down and make them feel like, well, what's going on here? I'm just trying to help this person.

So there's this complex interplay happening there.

But another is you can imagine the trans woman who goes actually into like joking territory and jokes about Project Ponytail, even though I don't mean to commandeer that example.

Holly: 00:55:04

Good.

Ian: 00:55:05

Yeah, but it's a great example. Right?

And you can imagine the person who jokes because they've had to joke their way through life to become accepted, and that poses another stressor on them because they feel awkward. They have to try to like fit themselves into this mold, into this moment.

So I do think that happens with a fair amount of regularity and is concerning. And I think we'll get better as there's more inclusive clinical spaces for these folks to go to.

In the meantime, I have a recommendation for them, which is to bring a support person with you if possible. And it may not always be possible, but bring someone who can help advocate for you.

Even as a woman entering a pain space, the number of females, cisgender females who are disbelieved and brushed off, not just for migraines and for pelvic pain, endometrial pain, all sorts of different pain conditions, musculoskeletal pain, even, like they're being histrionic, they're being what I've actually heard a pain Provider tell me one time in clinical training that this patient is histrionic about their pain. And of course,.

Holly: 00:56:23

That's like, can we go back to Shakespeare days? Like, hello?

Ian: 00:56:26

Exactly. I felt, I literally felt like I was talking to Freud. Right. And so this gets compounded when you add in. It's the same.

It's the precise problem of intersectionality. Right. It's compounded when you add in other factors of social disadvantage.

And in this case, it'd be something like being a transgender woman or being a bisexual woman, for example.

Holly: 00:56:49

There's so. There's so much need here. I mean, I, I think this just cracks it wide open with. There's so many implications, Ian. Like, there's, I mean, there's.

In terms of going back to the sort of systemic stuff we talked about, like the admission forms, you know, even, you know, that. That is, you know, something that I think would not be difficult for any clinic to change. It's a form, for Pete's sake. Do what you can. Right?

And then there are, like you said, other cues and things, like a flag on a clipboard, you know, pride, flag on a clipboard when you walk in. Or maybe they're not using clipboards anymore. What do I know? I sound, you know, ancient.

Megan: 00:57:35

Put it on your laptop. Put it on your laptop.

Holly: 00:57:39

But even as we work toward the slower but more meaningful societal change and people becoming more compassionate, more educated, more aware, there are at least little baby steps, little low hanging fruit that we should be taking advantage of and pushing hard on, you know, along the way, forms and, you know, small signals and providing practitioners with a couple really disarming questions. You know, if they themselves are not used to interacting with someone from the LGBTQ community, maybe they, they're afraid of saying the wrong thing.

And so maybe there are two questions that we can put in their hands to say, you know, if you're interacting with a, you know, a minority, a sexual minority patient in this way, here's a couple ways to connect.

Megan: 00:58:33

That's a great idea. Yeah. A few years ago, I put the PHQ2 on my intake form as well.

It was one of the requirements, I think, for CMS at that point to screen for depression. Is there, is there a phq2 for this population?

Ian: 00:58:51

Not to my knowledge.

That would be something I think would have great value and it would be interesting to think of what those couple of questions would be to yours and Holly's point. I'd have to think on that, but I think it would be valuable. Yeah.

The difficulty, I think, comes in because there's such a profound level of healthcare disparity across so many areas for this population, for my community population. I want to say one thing, if I may. I know we're closing in on time, but there are so many different.

I mentioned a term earlier called minority stressors.

There's a lot of different minority stressors, which are things that induce psychological stress or distress in an individual that relate to their personal identity.

And in the queer community, this just being another term for LGBT community, things ranging from identity identity concealment or hiding my personal identity from other people to outright discrimination. And these things have severe consequences psychologically for us. I am a white male. I'm a cisgender male, but I'm a gay male.

So I have these intersectional components of my personal identity. The gay side, if you will. I still try to hide that to this day, and I don't do it intentionally anymore. I'm the gay pain guy online, right?

But it influences me in ways I don't even realize. I was at a faculty meeting the other day.

I'm the executive director of the center for Nursing Research out here in Rhode island, and I shouldn't have to hide myself because I'm the boss. And I sat down in a room, and I put my iPhone over the top of the rainbow that I have on my laptop so nobody could see it.

And I've been doing that for the last couple of years. And I think about that every day, because I. I don't. I'm in Rhode Island.

I'm in Providence, and I'm a doctor, and I'm a respected professional in my area, and I can and. And this all day long. But there's still a sense of personal fear that infiltrates itself, even for somebody like myself.

And then I think, how does that affect my patients or their friends and their chosen family or their circle and their queer identities? And so when it comes to healthcare disparities, our community has higher rates of cardiovascular disease and sudden cardiac death and heart attack.

We have higher rates of stroke. We have higher rates of smoking. We have higher rates of eating disorders.

We have higher rates of chronic chronic pain, higher rates of suicidality, and behavioral health conditions. And all of those all intersect. So there's a. An intersection between pain and substance abuse that's never been explored in this population. Quickly.

One example. Lesbians, have a 40% greater rate of chronic musculoskeletal pain, in some cases, 40 to 140%, depending on which study you look at.

There's two or three studies. They also have a 40% greater rate of opioid use disorder.

Megan: 01:02:04

Wow.

Ian: 01:02:05

And I wish I could get an NIH grant right now to study that problem, and I just can't. So here I am writing direct to consumer to tackle that. But to your point, there is a lot that could be introduced. I just don't.

I don't know what I would want those couple questions to be, because there's so much to tackle, if that makes sense.

Megan: 01:02:30

Yeah, it really. So broad. It's a really broad patient population, even though we're kind of lumping them together.

You know, a lesbian experience is different from a trans male experience. Wildly. Right?

Ian: 01:02:44

Wildly.

Holly: 01:02:46

Megan, you, like, you've reminded me when I've asked these sweeping questions about chronic pain, you'll remind me every individual is different. So you. So you could have three lesbians from the same zip code and. Wow, shocking. They all don't present the same.

Megan: 01:03:00

Right.

Holly: 01:03:00

Or one of them has a fear factor and one of them doesn't. You know, so I. I could see where.

Yeah, those questions could be problematic because it's like, it could set one person on edge where it makes another person feel very much at ease. So, yeah, I think. I think that's a really good kind of point. And takeaway to Megan is like, you know, let's not.

Not over correct in the sense that now we lump everybody together with the assumption that, oh, now we've taken care of the LGBTQ problem, you know, because it's still. It's never going to be individualized enough. Like, we. We can't over individualize enough.

Megan: 01:03:36

Yeah, absolutely.

Ian: 01:03:38

For that, I totally agree.

Megan: 01:03:40

Yeah. Well, thank you so much, Ian. It was so wonderful having you on the podcast. I think we might have to have you back.

Holly: 01:03:47

I want Dr. Ian back. Yeah, we keep this one timer. And if you also would, as you start pursuing more of this research, you know, you may have an update for us.

Like, you may have it. You know, that would be really cool to be able to talk about, you know, something that was popping up on your radar. So we'll. We'll keep.

Ian: 01:04:08

I would love that.

Megan: 01:04:10

Definitely.

Ian: 01:04:11

Absolutely.

I would love to come back and I will hopefully have updates because there are only a few of us in the world doing research on this very population and its relationship to chronic pain. I'm. I feel lucky to count myself among them. So hopefully I'll have something interesting to bring back to you at a later time. I'm honored to be on.

I very much appreciate you both for having me. And for those that are interested, I know you Mentioned it earlier, but I can be found on Instagram at the gay pain guy.

And as long as you don't mind my doing a quick plug for it. I recently.

Megan: 01:04:44

I totally forgot.

Ian: 01:04:45

No, no, it's okay. It's okay.

I recently published the very first book ever on this disparity in chronic Pain for LGBT People for this Pride month, which is available now on Amazon.

Holly: 01:04:57

Wow, that's interesting.

Megan: 01:04:59

We'll put a link in our show notes to that book.

Holly: 01:05:02

Yeah, that is brilliant, in fact, because there was a question I had in there and it could be a quick answer, even just yes or no. Ian. But does the LGBTQ population have awareness about this issue among them? Like, do. Do they?

Do we need to raise awareness also among that community that, like, hey, if you're experiencing chronic pain, like this isn't, you don't have to live like this.

Like, we, you know, as a population, as a community, we are more prone to this, or this is a real struggle for us and almost kind of like bang the drum within the community too, to get louder.

Ian: 01:05:38

No, I don't think that they know on. On Mass, actually. And even from a personal experience, I have had migraines since I was 12 years old. Episodic migraines.

And now as an adult, I won't say how old, I have chronic musculoskeletal pain at three sites, plus my migraines. And for years I thought this was just like the hand I was dealt.

Megan: 01:06:00

Yeah.

Ian: 01:06:02

But I didn't realize that there is actually a population prevalence disparity here.

Holly: 01:06:07

Powerful. Well, we need to keep learning about it. We're lucky to have you. Thank you.

Megan: 01:06:12

Yes, thank you so much, Ian. And we look forward to hearing updates in the hopefully not so distant future.

Holly: 01:06:20

You know, hey, no matter how long your pain has been going, no matter how bad it's gotten, if you're still.

Megan: 01:06:25

Breathing, your pain can change.

Outro: 01:06:32

Thank you so much for listening to this episode. We appreciate your tuning in and being part of the Unpacking Pain experience.

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You can get in touch at unpackingpain@gmail.com and we'd love to hear your thoughts or questions, your stories, even topics that you'd like us to cover in a future episode. Together, we're all fostering community as we shed light on the realities of living with chronic pain and discover new ways forward.