Every epilepsy journey is unique. It’s important for every member of the epilepsy community to feel comfortable sharing their story – and their most authentic self - with the world. In honor of Pride Month this June, we celebrate the LGBTQI+ members of our community by encouraging them to share their stories and prioritize their mental and physical health.
According to the Centers for Disease Control & Prevention (CDC), members of the LGBTQI+ community face increased health and mental health challenges when compared to those who identify as heterosexual.
The stress of living with epilepsy can be difficult under any circumstances, but members of the LGBTQI+ community may have additional stressors present in their lives, such as discrimination, exclusion, access to care, and a lack of safety.
Finding the right healthcare team plays an extremely important role in managing epilepsy and your personal wellness. However, extra steps may need to be taken to ensure certain healthcare professionals are the right fit to treat someone who identifies as gay, lesbian, bisexual, transgender, non-binary, queer, or intersex. The CDC recommends using the GLMA Provider Directory as a way to find providers who are LGBTQI+ friendly.
In addition to finding the appropriate healthcare providers, self-management programs can reduce stress and help maintain mental wellbeing. These programs were created by a team of individuals who care about the health of people with epilepsy and work to improve their quality of life. We encourage you to find a program that’s right for you to reduce stress and depressive symptoms in your everyday life.
In addition to maintaining your mental health, it is important to be aware of your physical wellbeing.
Some transgender individuals living with epilepsy may elect to pursue gender-affirming healthcare. This involves hormonal and other treatments to match a person’s physical/physiological sex characteristics with their identified gender. It is important to work closely with your healthcare team before starting gender-affirming treatment to learn how hormone therapy may affect your seizure frequency. Many antiseizure medications have potential interactions with gender-affirming treatments, so therapeutic adjustments may be necessary. Keeping track of seizure frequency, triggers, and having a seizure action plan can help you stay well while undergoing therapy.
We understand many members of the LGBTQI+ community may not feel safe expressing their identity, let alone the fact that they live with epilepsy, within their local area or to their friends and family. The Epilepsy Foundation offers a free, confidential Epilepsy & Seizures Helpline available 24-hours a day, 7-days a week in English (1.800.332.1000), and Spanish (1.866.748.8008). In addition, the Epilepsy Foundation’s eJourney blog provides a forum and safe place where LGBTQI+ people can share their epilepsy journey.
The CDC and the United States Department of Health & Human Services (HHS) also offer links to resources such as networks, health clinics, hotlines, and more to help you navigate your overall wellness and safety.