By Daniel Reynolds
Originally published on Advocate.com April 04 2014 5:27 AM ET
Honestly, I didn’t really know much about multiple sclerosis until very recently. I had heard of MS, of course. In high school I learned that it was a disease that could often be quite serious, one that causes damage to a person’s nervous system that can result in disability, depression, and even death. But beyond these basic facts, I rarely thought of MS in my everyday life.
No one (that I knew of) had it, which may not be surprising. Unlike cancer or HIV, MS is not a very common disease. Fewer than 2.5 million people are affected by it across the globe, reports the World Health Organization, and of that number, fewer than 350,000 are estimated to have MS in the United States. There are more than 317 million people in this country, which means Americans with MS are quite a small minority. And the number of LGBTs with MS? Well, that’s a pebble in the ocean.
When a disease doesn’t affect you or someone you love, it is easy to ignore it and place it in the mental silo of “somebody else’s problem.” But as I write for outlets like The Advocate and HIV Plus, publications that strive to give power to the pebble, I wanted to learn more about the people who suffer with this disease, particularly those within the LGBT community. After some research, I discovered a gay support group based in the Los Angeles area. I successfully reached out to one of its members, Steve, who informed me of a sad circumstance: The organization had only recently disbanded, with no plans to re-form.
There were a number of reasons for the group’s demise. Sufferers of MS often have difficulty getting around, he told me. Many of the members couldn’t drive because of the symptoms, which tend to vary in type and severity with each person. They were often prevented from traveling because of high temperatures as well. Since Steve was one of the few who always went, he watched as support group’s attendance dwindled from a dozen, to a handful, to just himself and the group’s founder. He mainly credits a "lack of support." The venues didn’t help either. Since the group did not have a formal space where it could congregate, it would convene at public places like coffee shops or a restaurant like Applebee’s, where they often found it difficult to discuss the more intimate and private aspects of suffering with this disease.
As Steve told me the story of his support group, I couldn’t help thinking of the LGBT club I had been a part of in college, a small, conservative institution with few others like me, an out gay man. Occasionally, I would be the only person to show up for those weekly meetings. At those times, I too would wonder if anyone cared. And finding love? Well, that was outside the realm of possibility at the time. But I understood the importance of having a place where others will listen and understand.
Steve told me his own struggles with finding love in Los Angeles, which, as the second largest city in the country, shouldn’t be a place where a gay man would have a hard time finding a date. But for those with a disease like MS, it can be a real challenge.
“I was single, and I thought I would never meet anybody,” Steve remembered feeling when he was first diagnosed. “I was scared. I didn’t know what was going to happen to me.” Other than the physical effects of the disease, which can be debilitating, there is a stigma within the gay community toward anyone “with any kind of disease, whether its cancer, AIDS, or MS,” Steve says. “You feel shunned. With me, it’s like OK, I’m gay, I’m a recovering alcoholic, and now M.S. and single? Now what? You feel like the cards are stacked against you. It’s another hurdle.”
But with help from his support group, he found hope for a future. He educated himself about finding a healthy diet, and even quit smoking. As he gained more information, he developed more confidence. In July, Steve met a man at a barbecue, and the pair recently returned from a romantic getaway in Seattle. “MS isn’t the end of it,” he told me. “For anybody who has MS, don’t give up!”
After speaking with Steve, I was encouraged to attend a fundraiser for Walk MS, which is set to take place Saturday morning in Pasadena. There, I spoke with one of Walk MS’s most vocal advocates, Scandal’s Guillermo Diaz. Although Diaz does not have MS, he was awakened to the cause when one of his best friends acquired the disease. Being gay, he said, allowed him to “be understanding” for those who, like Steve, felt they were alone when they are diagnosed. “I understand the struggles that we’ve been through [as LGBTs],” Diaz said. “This is also an important cause. It’s something we’ve been fighting for a long time.”
As I’ve spoken more about MS to friends and family, I’ve been surprised to learn that there are a few people I know who are affected by the disease in some way. Clearly, this is not “somebody else’s problem,” as I once thought. The more I learn, the more I encourage LGBT people to also educate themselves, help raise awareness, and participate in events like Walk MS. There are those we know and love, both straight and LGBT, who suffer in silence, which is an experience that many of us, unfortunately, can relate to. And even if you don’t know someone with MS, recognize that there are those within our community who do. And they need support — not stigma.
DANIEL REYNOLDS is the editorial assistant at The Advocate. Follow him @dnlreynolds.