Photo from The Center’s 1994 Gay Pride March on the U.N.
Recently, ME activists have been reaching out to the New York LGBTQ community to educate them about ME and build allies.
Terri Wilder, Gabriel San Emeterio and Kristina Osobka went to The Center in NYC, where they met with the organization’s executive director and staff nurse. They discussed what ME is, specific issues that impact the LGBTQ community, the possibility of having a screening of Unrest, and tapping The Center’s network to connect with larger groups of LGBTQ service providers.
“One of the things we stressed was that in a community where people are already marginalized, we need to raise awareness to remove some of the stigma, because for someone who has ME and is gay, it’s stigma over stigma,” says San Emeterio, who connected with #MEAction through an Unrest screening.
“We want The Center to get behind us to petition the Department of Health for research and training of doctors, and issuing diagnostic guidelines.”
At the meeting, Osobka discussed the isolation that both ME patients and people in the LGBTQ community grapple with. She recommended reviving “buddy” programs that had been around at the height of the AIDS epidemic, where able-bodied allies made home visits, do light housework, help with errands and relieving loneliness.
“This disease is isolating as it is, but more so because of one’s sexuality. People can become estranged from friends and family and they don’t have a lot of options in terms of ways to get normal everyday things done,” says Osobka. “A lot of times, even in hetero couples, partners leave because they can’t take it. It adds to the desperation.”
She hopes that by starting this conversation with The Center in New York, it could become a model for other LGBTQ organizations around the world to help those suffering from ME.
Osobka, who administrates the LGBTQ MEAction Facebook group, also appeared on a March 13 radio spot on OUT FM (starting about 15 minutes in). In addition to sharing her own story with ME, she discussed what the disease is, its symptoms, and the history of governmental neglect and mischaracterization.
“All this is a great way to bring in more LGBTQ people and connect under the #MEAction umbrella,” says Wilder, who now plans to pitch articles to LGBTQ-focused publications.