Spinal cord injury in sexual and gender minority individuals

Sexual and gender minority (SGM) individuals face disparate access to and outcomes within healthcare, however little is known about spinal cord injury (SCI) in SGM populations. The term SGM is used in clinical and research settings to describe individuals who are minoritized based on their sexual orientation, gender identity and/or gender expression. This includes, but is not limited to, those who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ).¹ Studies have shown that SGM individuals have particular disparities in health, including higher rates of disability and younger age at disability onset compared with heterosexual, cisgender (non-transgender) peers.^2,3 Spinal cord injury is a significant source of morbidity and mortality worldwide,⁴ and the burden of SCI morbidity is experienced disproportionately in marginalized communities.⁵

Approximately 5.6% of the US population, or 18 million individuals, identify as LGBT, and this is likely an underestimate.⁶ If rates of SCI in SGM individuals mirror that of the general population, this estimate means that there are approximately 1000 new SGM individuals with SCI annually and over 16,000 SGM individuals living with SCI in the US alone.⁷ The SGM community is growing, with 1 in 6 adult members of Generation Z identifying as LGBT,^6,8 however almost nothing is known about the experiences and needs of SGM individuals with SCI.

In addition to new motor, sensory and autonomic impairment, SCI is associated with a broad range of symptoms, including chronic pain, cognitive impairment, depression, and changes in sexual function. These symptoms may differentially affect SGM individuals. Cognitive concerns after SCI, for example, may exacerbate existing disparities in rates of dementia and subjective cognitive impairment in SGM people.⁹ Disparities in mental health are well described in SGM populations,^10,11 which may worsen after SCI. The SGM community also has higher rates of substance use,¹² which could alter pain experiences after SCI as well as influence clinicians’ willingness to prescribe adequate pain control. Individuals who experience SCI may experience changes in sexual function that require dedicated counseling and management. If clinicians approach discussions assuming heterosexuality (heteronormativity) and cisgender identity (cisnormativity), they risk alienating their patients and losing an important opportunity to improve quality of life after SCI. Clinicians therefore need the skills to discuss sexuality in an inclusive and non-judgmental manner.

Another aspect of SCI care in gender minority (GM) individuals that remains unexplored is the role of gender-affirming hormone therapy (GAHT). GM people may choose to use GAHT, including feminizing hormones (estrogens, antiandrogens, progestogens) or masculinizing hormones (testosterone). Research suggests that estrogen, progesterone, and testosterone may be neuroprotective in the setting of SCI.^13–15 In animal models, estrogen helped to alleviate neuropathic pain after SCI.¹⁶ It remains unknown, however, if GAHT influences outcomes after SCI in GM individuals. Dedicated research in GM people using GAHT is needed as the formulations, dosing, and goals of hormones used for gender affirmation differ from hormones used in cisgender people for hormone replacement therapy.

The consequences of SCI extend beyond the physical; SCI affects a broad range of socioeconomic factors that directly and indirectly influence health. For example, SCI can lead to economic inequities. In a 2009 review, only 35% of individuals with SCI were employed,¹⁷ significantly lower than employment rates in the general population. SGM people have higher rates of poverty and unemployment compared with heterosexual, cisgender peers, particularly transgender people and SGM people of color.^18–20 It remains unknown, however, if SGM individuals who have experienced SCI have compounded vulnerability to poverty and unemployment.

After SCI, individuals require a broad network of support. SGM individuals may not have a relationship with their family of origin, or their family may not recognize or accept their identity or significant other. This conflict becomes salient if family of origin is asked to serve as surrogate decision makers or caregivers. Additionally, individuals with SCI may seek support through survivor networks or support groups, which may not be inclusive of SGM individuals.

SGM individuals may also experience discrimination in healthcare settings, including rehabilitation centers and long-term care facilities. Studies have consistently documented that SGM people delay or avoid presenting to care due to fear of discrimination. Unfortunately, this fear is not unfounded: 20–50% of sexual minority (SM) people^21,22 and 30–70% of gender minority (GM) people report discriminatory encounters in healthcare.¹⁸ While there are fewer studies examining the experiences of SGM people in rehabilitation centers and care facilities, the studies that do exist echo the findings of the larger healthcare system.^23,24

Despite the potential for SCI to exacerbate existing disparities in the SGM community, SGM individuals remain largely absent from SCI research and advocacy. In a 2021 scoping review of SGM health in neurology, for example, there was only a single study published on SCI between 1960 and 2020 with an identified SGM participant.²⁵ This 1988 case report described SCI in a cisgender gay man with HIV infection to highlight the similarity between symptoms he experienced from SCI and symptoms of AIDS-defining illnesses.²⁶ There are a number of unanswered questions in need of dedicated research. Only with more inclusive research and expanded education for healthcare practitioners caring for individuals with SCI can we provide equitable and culturally sensitive care to this underserved community.

Disclosure statement

No potential conflict of interest was reported by the author(s).