Being a "Minority within a Minority": LGBT Multiple Sclerosis
Members of our Editorial Team here at MultipleSclerosis.net discovered a research project called LGBT Multiple Sclerosis by De Montfort University PhD candidate Periklis Papaloukas. The project explored the experiences of lesbian, gay, bisexual, and trans individuals living with MS. Given the lack of research around living with a chronic illness as an LGBT person, we were delighted to be able to interview Periklis about his project and his findings.
Highlighting stories of LGBT people living with MS
Alina (MultipleSclerosis.net Editorial Team member):
Could you tell us a bit about your project and what you hoped to accomplish by highlighting stories of LGBT people living with MS?
I am a PhD candidate in Psychology, and I am interested in chronic illness and its impacts on people’s lives. My PhD is all about exploring the experience of LGBT people living with MS. I wanted to understand and learn more about how the two identities – one as a person living with MS and one as an LGBT person - meet each other; how it influences day-to-day living, relationships with other persons, and the personal sense of who they are.
To understand these experiences, we had long interviews with the participants where we spoke about everything related to their experience as LGBT persons with MS. We talked about issues of diagnosis, sexual and gender identity, the impact on relationships, etc.
Using photos to illustrate experiences
At the same time, I asked my participants to take photos, if they so wished, and bring them in the interviews with them. Those photos were representing what MS means to them as LGBT people. The majority chose to take photos, and that allowed me to gather 50 hours of interviews and 180 photos from participants from all over the world.
I consider the people that took part as the experts of my research, the experts in their lives and their experiences. So, I wanted to make sense of it all and give to LGBT people living with MS a voice and a platform to share their stories from. So, part of the project was a photo exhibition that I held that allowed visitors to explore and understand those experiences. We displayed dozens of photos and had two short talks from participants of the research sharing their stories with the audience.
You can learn more about the photo-engagement event here.
A lack of research around LGBT communities and chronic illness
You have mentioned that the lack of research around LGBT communities and chronic illness inspired you to initiate this project. What led you to focus on MS, in particular?
There is a considerable lack of research on chronic illness in LGBT populations. The majority of research focuses on HIV/AIDS which is a chronic illness with specific meanings that we can’t apply to other chronic conditions. There is an almost universal lack of research in neurological conditions and specifically MS in LGBT populations.
I was interested in MS specifically because of three reasons. Firstly, MS is the most common neurological condition affecting young adults. Secondly, MS is a highly individualized and unpredictable condition, and its progressive nature is an important part of it; these characteristics make it unique among chronic illnesses.
At the same time, research has shown that LGBT persons experience health discrimination and exclusion because of homophobia and transphobia. So, I was interested to see what happens when those two life experiences with these unique characteristics meet (LGBT and MS). And also, finally, I was a bit familiar with MS due to personal circumstances as I have loved ones diagnosed with MS.
What surprised you the most about the lived experiences of those you interviewed?
My research has found that LGBT people with MS face difficulties in a number of ways. The invisibility of the condition creates challenges because of disability issues. The invisibility of LGBT persons within MS contexts (e.g. MS leaflets) and the lack of discussions about disability, chronic illness, and MS within LGBT contexts are vital topics for LGBT persons living with MS.
Being a “minority within a minority” creates more losses and discrimination both within LGBT communities and also generally. One participant called it the “double whammy!” as homophobic and ableist experiences create a unique sense of exclusion for my participants.
What I found interesting is the double expression of belonging from my participants.
MS is not fully understood
A number of participants disclosed that they feel that their MS is not fully understood “On one hand, oh, that’s great, being on the LGBT site, but having something like MS doesn’t help me that much!” as a young gay man shared with me. Another young participant echoed that sentiment: “…so, I think gay and MS don’t really go together” and finally a lesbian talked about the body-conscious LGBT community by asking “Does the LGBTQ community have my back? I’m sorry to say I don’t think it does”.
At the same time, the participants shared with me the strength, resilience, and support they acquired by being part of the LGBT communities. One trans participant said, “I think the LGBT community has definitely helped me because I have a connection with that community."
What’s one thing you hope readers will take away from your research?
One of my goals, when I started this project, was to raise awareness about the specific aspects of the lives of LGBT persons living with MS, so I hope readers will find interest in the topic. I hope they will understand the double discrimination they face, being a minority within a minority, but also recognize the resilience and strength of this group of people.
Have you ever heard someone say the following: