Understanding Chronic Pain in the LGBTQIA2S+ Community

A new analysis of chronic pain prevalence in sexual minority populations shows that people who identify as lesbian, gay, bisexual, or “something else” live with more pain than straight individuals. The work reveals substantial differences within those populations, too.

According to the last Gallup poll in 2022, more than 7% of American adults identify as lesbian, gay, bisexual, or transgender. That translates to roughly 18 million people, all of whom will interact, at some point, with the country’s healthcare system.

But while lesbian, gay, bisexual, transgender, queer/questioning, intersex, asexual, two-spirit, and other sexual minority identities (LGBTQIA2S+) tend to have poorer physical and mental health than their straight counterparts, there has been scant research into the prevalence of chronic pain in these individuals.

Now, researchers led by Anna Zajacova, University of Western Ontario, London, Canada, have conducted an analysis of chronic pain prevalence in people who identify as lesbian, gay, bisexual, or “something else,” relying on US National Health Interview Survey (NHIS) data collected between 2013 and 2018. They discovered substantial differences in the prevalence of pain between these sexual minorities and straight individuals.

For instance, the prevalence of pain at three or more body sites (which could include headache or migraine) was twice as high in people identifying as bisexual or “something else,” and 50% higher among gay/lesbian individuals, compared to their straight counterparts. Striking differences in prevalence also emerged when the researchers compared the sexual minorities to each other.

Anna Pace, director of the Transgender Headache Medicine Program at the Mount Sinai Hospital, New York, US, who was not involved in the new research, said the results confirm what many clinicians who work with LGBTQIA2S+ patients believed to be the case.

“Anecdotally, I’ve found that many of my LGBTQIA2S+ patients do tend to live with severe pain, including headache. But we didn’t have this kind of data before to back up what we see in practice,” she said.

“While I was not surprised to see that people in these communities live with more pain,” Pace continued, “I was surprised to see that bisexual individuals and people in the ‘something else’ category had more pain compared to the other groups. This shows us that clinicians just can’t think about the straight population and the LGBTQIA2S+ population. We need to think about the disparities within the LGBTQIA2S+ community, too, as we work to take care of these patients.” [See MSC related interview with Pace].

The study appeared online ahead of print in PAIN on March 30, 2023.

A unique dataset makes a new study possible
When Zajacova, a demographer and sociologist, first looked into the prevalence of chronic pain in sexual minority populations, she was struck by how little data there were in the scientific literature.

“This is a really important question to answer, as we know that LGBTQIA2S+ adults, overall, tend to have worse health outcomes. But to answer this question about prevalence, you need to have a confluence of data and scientists interested in the answer,” she told Migraine Science Collaborative. “Until a few years ago, we didn’t even have the data to address the question. Now, we finally have an accumulated dataset with enough cases where we can do the analysis and have reasonable analytic power.”

Those data come from the 2013 to 2018 waves of the NHIS, an annual, nationally representative cross-sectional survey that queries American citizens about their health. While the survey launched in 1957, it wasn’t until 2013 that the NHIS included questions about sexual orientation. Here, the survey asked participants whether they were “lesbian or gay,” “straight, that is, not lesbian or gay,” “bisexual,” “something else,” “I don’t know the answer,” or “refused.”

“The ‘something else’ category could really capture anything, from asexual to transgender. We don’t really know,” said Zajacova. “That’s the way the question was phrased in the survey, so while we would have liked our study to look at all LGBTQIA2S+ groups individually, we really can only say it covers L, G, B and ‘something else’ identities.”

The survey also included questions about pain in five anatomic sites: low back pain, neck pain, severe headache or migraine, facial or jaw pain, and joint pain.

The researchers would analyze two indicators of pain from the survey. One was chronic pain in three or more of the anatomic sites over the past three months. The second indicator was general chronic pain, where participants were asked how often they experienced pain – never, some days, most days, or every day – over the past three or six months. The study would include more than 134,000 people aged 18 to 64 years with general chronic pain, and more than 95,000 with chronic pain in three or more sites.

A big pain penalty
The study found that people who identified as bisexual or “something else” had the greatest general chronic pain prevalence across all the groups (23.7% and 27%, respectively). But gay/lesbian individuals also had a higher pain prevalence than straight individuals (21.7% and 17.2%, respectively).

That translated into relative differences with straight individuals ranging from 26% higher pain prevalence in gay/lesbian individuals to 57% higher prevalence in the “something else” group.

The investigators saw even larger relative differences when looking at the second indicator – pain in three or more sites. Here, the prevalence of pain was 20.1% in bisexuals, 22.9% in “something else” individuals, and 11.5% in straight people. That equated to twice the pain prevalence in “something else,” and 75% higher pain prevalence in bisexuals, compared to straight individuals (the researchers calculated pain prevalence ratios to reach these conclusions). Pain prevalence in gay/lesbian people was 16.1%. That equated to 40% higher pain prevalence relative to straight people. These differences remained statistically significant and large when the researchers controlled for age, sex, and a host of other factors.

“It’s clear that sexual minorities pay an excess pain penalty,” Zajacova said. “We expected that sexual minorities, as a whole, would have more pain because, on average, they struggle with more social rejection, violence, and stigma. But what we did not anticipate was the magnitude of difference in bisexual and the ‘something else’ groups. It may be that these groups have additional stressors and lack of support. They may feel rejection not only from their families, but from the LGBTQIA2S+ community as well, and that influences their experience of pain.”

Zajacova said it was important to look at numerous variables, ranging from racial identity to marital status to alcohol use, in all of the study groups.

“This study was really only getting the lay of the land, but it’s so important to control for other variables that might influence the results,” said Zajacova. “For example, individuals who identify as LGBTQIA2S+ tend to be younger. That means you need to control for age. But there are other characteristics you need to control for as well. We used these methods so we could control for all these other variables that might influence the results, but also because they give us prevalence ratios, which are much easier for even a lay audience to interpret.”

The results indicated the sexual minorities differed from straight individuals on all characteristics except physical activity. For example, sexual minority adults were less likely to be married, have children, or be a homeowner, and more likely to drink and smoke excessively. But there were also differences among the three sexual minority groups, too, showing that those groups cannot be considered monolithically.

Finally, when the researchers asked what characteristics drove the disparities in pain, they found that psychological distress was the most important factor, much more so than healthcare, health behaviors, and even socioeconomic status.

What about headache?
When asked specifically about headache/migraine pain, Zajacova said that sexual minorities pay a “pain penalty” there, too. And, as with chronic pain overall, bisexual and “something else” groups had a higher prevalence of headache/migraine than other groups.

“Compared to other types of pain, migraine and headache don’t necessarily stand out in terms of having particularly large disparities between and within sexual minority groups,” said Zajacova. “But these disparities do occur for every pain site queried, which seems to indicate that painogenic factors impact the experience of pain across multiple systems and sites.”

A first step
Pace said she was “thrilled” to see this sort of study undertaken and published in the literature but said the “something else” category is a major limitation.

“Everyone who didn’t identify as bisexual, gay, or lesbian was lumped into this single group,” she said. “Now that we see that people who identified as bisexual may experience pain differently than gay and lesbian individuals, it shows us how important it is to look at these different categories within the LGBTQIA2S+ community, as other differences or disparities may be present. Future studies should ask about both sexual orientation and gender identity to help us understand the differences in prevalence in different groups so we can better tailor our approach and our treatment regimens.”

Zajacova agreed and said she and her colleagues are already working on studies looking more closely at the different subcategories of sexual orientation and sexual identity. They are focusing on timelier data, too.

“I am very curious about how things are developing for these populations because there have been a lot of changes in the last few years,” said Zajacova. “We’ve seen laws and legislative victories that support same-sex marriage but then also an increase in LGBTQIA2S+ violence over the last few years. But even with this dataset, we see that pain at the population level reflects the sum total of both social and biological inputs. It would seem that the extra stressors that LGBTQIA2S+ adults face, as well as the lowered social support, directly aligns with the experience of pain.”

For her part, Pace hopes that clinicians will look at the new data and start considering social determinants of health related to sexual orientation and gender identity, and how these factors should be addressed to drive better health outcomes.

“We need to improve access to care for the LGBTQIA2S+ community because many individuals have reported discrimination in the past, even in healthcare settings,” she said. “We already know that people who experience discrimination have higher likelihood of developing more disabling types of pain as well as poorer health outcomes. Clearly, there is something going on here that we need to pay attention to. We need to make sure our patients are comfortable sharing this kind of information with us so we can ask the right questions about their pain and how it affects their day-to-day life, so we can achieve better treatment outcomes and improved quality of life.”

Kayt Sukel is a freelance writer based outside of Houston, Texas.

Reference
Chronic pain among U.S. sexual minority adults who identify as gay, lesbian, bisexual, or “something else.”
Zajacova et al.
PAIN. 2023 Mar 30. Online ahead of print.