Seizures and Epilepsy in the LGBTQ+ Population

About 2.4 percent of people who identify as LGBTQ+ have epilepsy. That is compared to 1.2 percent of cisgender heterosexual people. Cisgender means identifying as the same gender you were assigned at birth.¹

It is not clear why people in the LGBTQ+ community have higher rates of epilepsy. One theory is the minority stress theory. This theory suggests that system-wide discrimination against the LBGTQ+ community can lead to negative physical and mental effects. Other stressors may include:^1,2

• Isolation
• Lack of safety
• Judgment and bias from healthcare providers
• Other physical and mental health issues

Researchers are still studying how these stressors might lead to higher rates of epilepsy among LGBTQ+ people. Living with epilepsy can be hard under any circumstance. But members of the LGBTQ+ community face increased health challenges.²

Epilepsy and gender-affirming care

Some people with epilepsy who identify as transgender might pursue gender-affirming healthcare. According to the World Health Organization (WHO), gender-affirming healthcare includes psychological, social, behavioral, and medical care. These care options are "designed to support and affirm a person's gender identity."^3,4

Gender-affirming healthcare often includes hormone therapy. But for people with epilepsy, anti-seizure drugs can have interactions with hormone therapy. Some anti-seizure drugs reduce testosterone, while others reduce estrogen. So, adjustments to the anti-seizure drugs might be needed.³

Trans men who no longer have periods might actually have fewer seizures if those seizures typically occured with menstruation. But trans women who have estrogen treatment might have more seizures.^3-5

Trans women are also at higher risk for other neurological disorders like multiple sclerosis (MS), dementia, and ischemic stroke. In fact, non-suicide death rates among transgender and nonbinary people are almost twice as high as those rates among cisgender people.^3-5

More research is needed around the link between gender-affirming care and epilepsy treatment, including:^5,6

• Seizure control
• Success of hormone therapy
• Risk of possible additional conditions like loss of bone density and depression

Mental health treatment and epilepsy

Depression and thoughts of suicide occur more often in the transgender community than in the cisgender community. The trans community also has higher rates of suicide.^6,7

Unfortunately, treating depression in LGBTQ+ people with epilepsy can be complicated. Some antidepressants can cause more seizures. Possible interactions between anti-seizure drugs and antidepressants also can occur.^6,7

On top of all this, transgender people often face prejudice from doctors and others in the medical field. Discrimination from health workers can lead to mental health issues such as:^6,7

• Delays in care
• Sense of isolation
• Chronic stress
• Internalized shame
• Feeling separate from others, even those who identify as transgender

The importance of looking at the whole picture

Doctors should look at all aspects of a person’s life to see what might be affecting their health. Understanding where the epilepsy and LGBTQ+ communities overlap will lead to better care.⁴

Seizures can be controlled with the proper treatment. But lack of health insurance and fear of discrimination might cause members of the LGBTQ+ community to delay or avoid medical care. Willingness to seek care may also be influenced by the current legal and political climate in the United States.⁴

Finding the right healthcare team

Access to a supportive healthcare team is key in managing epilepsy. But members of the LGBTQ+ community might need to do extra work to find the right fit. The LBGTQ+ Healthcare Directory can help you find doctors based on your zip code and area of need. These doctors are required to affirm their commitment to treating LGBTQ+ people with the same care they would show to any other population.⁸

There are also self-management programs that LGBTQ+ people can use. These programs are designed to help people with epilepsy serve as active members of their care team. Self-management includes keeping track of appointments and medicine schedules. Other vital parts of a self-management program include:⁹

• Recognizing seizure triggers
• Reducing stress
• Getting enough sleep