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When LGBT meets MS - Q & A with Periklis Papaloukas

19 April 2017

I recently participated in a study exploring the experiences of people in the Lesbian, Gay, Bi-sexual, Transgender (GLBT) community living with MS. It was really great to be interviewed for this research, because it was the first time I had been asked about my experiences as a gay man living with MS (which was the reason why I started contributing to Uninterrupted in the first place!). I believe having a diverse range of voices in the MS community is not only important, but in fact vital, and this study highlights that. Based in the UK, Periklis Papaloukas (the PhD Researcher behind the study) was kind enough to answer this Q & A for the Uninterrupted site.

So can you please tell us a little bit about yourself and what you've been working on?

I’m Periklis Papaloukas. I’m originally from Cyprus, and now I live in Leicester, England. I’m doing my PhD here at De Montfort University (DMU) with a fees-only scholarship and I’m researching the psychological and social components of being a person from the LGBT communities and living with multiple sclerosis. At the same time, I’m working on other projects, independent from my PhD, related to sexual health and HIV prevention especially among the gay community. My background is in psychology and I’m mostly interested in the psychological and social impacts a physical condition can have on a person’s life, and especially the implications of chronic illness in members of marginalised social groups.  Now, I’m thinking about it I’ve always had an interest in how the excluded or people from minorities are also disenfranchised in terms of healthcare in one way or another.

And why did you choose this as a topic?

This is a long-ish story. I’ll try to be brief and not bore people. It all started back in 2013 when I came across a call for a PhD position from De Montfort University and it was about exploring LGBT health mostly with qualitative means of research (e.g. interviews etc.). I thought, well I have an MSc (Master of Science) in Health Psychology, I’ve always been interested in health issues/chronic illness in minorities, and LGBT people more specifically, so, why not pursue that in a PhD level. It became apparent though, soon into my research journey back in 2014 (which feels like centuries ago now), that I needed to be somewhat more specific concerning chronic illness. Chronic illness is a very vague term in my opinion. Cancer, HIV/AIDS, rheumatoid arthritis, sickle cell condition, and multiple sclerosis are all chronic illnesses. They are all special though, with symptoms which connote different meanings. Living with HIV is not the same as living with multiple sclerosis, living with multiple sclerosis is not the same living with cancer, and so on and so forth.

So, after having several conversations with my supervisors (Prof Julie Fish and Dr Iain Williamson) I decided to start exploring what is out there about LGBT communities and chronic illness. And what I’ve found is that there wasn’t much research beyond HIV/AIDS. One might ask, why MS though? Well, I guess it's a combination of factors. Firstly, from a professional perspective I was really interested in MS’ ‘snowflake’ nature which makes it an unpredictable and individualised condition, and how those impacts influence a person’s life. At the same time, research has shown that there are specific health inequalities for LGBT individuals because of issues of homophobia, exclusion due to sexuality and gender identity etc. So, what happens when those two life experiences meet (LGBT and MS)? What is the experiential reality of these people? Are there more or less impacts, and what are those? Finally, I was somewhat familiar with MS due to personal circumstances as I have loved ones diagnosed with MS.

Was it difficult finding respondents, and how many people did you end up interviewing?

I wouldn’t say it was difficult, perhaps challenging is a better word to describe it. I was a bit over-ambitious in the beginning and perhaps now that I’m thinking about it, a bit naïve, research-wise, with my pre-set criteria. I had this 8x4 number in my mind. Eight people from each of the four groups of the LGBT acronym, but of course as everything related to human experience, qualitative research is messy and it doesn’t follow pre-set, biased criteria (and rightly so!). So, I managed to interview 28 people from all over the world from LGBT communities diagnosed and living with MS. People self-identified as gay, lesbian, bisexual, pansexual, queer, trans*, and gender-fluid. It was hard work in trying to find people to talk about their experiences, especially because we are referring to persons from a double minority, with all the connotations linked to that.

I must say though, I wouldn’t have been able to reach my participants without the help of multiple MS organisations worldwide which helped me by disseminating a call out for participation, and making people aware about the study. Also, social media helped a lot in spreading the word, and the participants themselves, by talking to friends about me and the research. It was hard work but it was surely worth it.

What countries were the respondents from, and did their stories and responses vary, or were their experiences quite similar?

The participants were from countries all over the world, mostly English speaking. The majority were from the UK, and especially England and Wales, and the rest from the US, Canada, Sweden, Germany South Africa, and of course Australia. I think the stories of the people taking part have a lot of similarities but there are some differences too. For example, almost all the participants live in countries with similar social realities and are influenced by homophobia and health inequalities (either felt or perceived). So, the experiences, the worries and the beliefs of LGBT people living with MS are comparable in the context of this study. If I could pinpoint a difference I would focus on the diverse health systems which need to be navigated by patients living with MS.

The study had unique options of documenting experiences through interviews and photographs, can you tell us a little bit about that?

That’s a very interesting point, and something I could talk about for hours. In psychology research, we tend to focus more on the quantitative aspects of a phenomenon, the stats, the numbers. They are important, I agree, but I personally believe that a health experience in the form of an unpredictable life-long chronic illness that MS is, it’s best described by the experiential experts themselves, the people living with MS, the LGBT persons with MS. Enter qualitative research and interviews! The stories narrated by the participants themselves have allowed me to get a glimpse of what it means for these people to be who they are. The photographs came from the same fundamental belief, and it’s a tool used to expand that; and they’ve helped me to visualise that spoken experience. In addition, we live in a visual world, we are visual beings and we tend to pay attention to the visual a lot, so, I felt that the photographs are ideal for raising awareness and spreading knowledge about LGBT people living with MS and reaching an audience beyond our secluded walls of academia. You know, as researchers we tend to believe that our research is amazing and it’s changing the world, but we live in what I describe as a bubble sometimes. How can we engage people outside universities, how can we make them aware of our work which needs to be a collaborative task between a researcher and LGBT people living with MS (for this study)?

So, I asked the participants if they wanted to take some photos about their lives as LGBT people living with MS. The majority chose to take part in the photographing aspect and took some photographs which we explored together in the interview. All the photographs were described by the participants themselves, as I wanted to weaken any kind of biases I might have had.  In total 175 photographs were created which I’m going to use for analysing purposes but also for dissemination, in the form of the exhibition I’m organising.

Can you tell us more about the exhibition?

This exhibition event is an engagement event which is funded by De Montfort University and the #DMUengage scheme. This is a competitive award which aims at engaging communities with innovative research which takes place at the university. I believe this is very important because it allowed me to practically employ what I’ve argued earlier about the need for real-world applicability of health psychology research. So, this event is organised by me in close collaboration with participants. I wanted this to be a platform for the participants to share with a diverse audience what is important to them in regards to living with MS and being LGBT persons. The participant-authored photographs from the research, exhibits which participants chose, personal testimonials, and live discussions with participants will be part of the event which will take place in Leicester, on May 11th. I hope that by engaging both the participants and the public with the topic, will create discussions and might provide a small, yet important, opportunity for enhancing wellbeing, and creating a better MS experience; and why not give opportunities for connection between people? Everything will be saved and archived in a website for further dissemination as well.

What do the overall results show?

As this is still work in progress, I can share with you some preliminary understandings of the findings. The full work will be published next year at some point (hopefully!), as part of my thesis. I will focus on two major initial themes or patterns. Firstly, there are the general issues with disability, the condition’s progression and worries about the day-to-day living. I believe these issues, worries, hopes, and aspirations are the same for all people living with MS, irrespectively of sexuality or gender-identity. Issues of accessibility, invisibility of MS, and disability concerns were shared with me. Then there are the more particular implications which appear due to this intersection of identities.

In detail, in terms of the multiple groups of the LGBT spectrum, I can say that there are experiences which might vary because for some groups there are essential issues which might not exist at all in other. For example, trans* individuals, and especially those going through transition must deal with medical aspects from both identities –hormone related therapy and MS medication. At the same time, conceptual concerns might be expressed differently. Issues about body image may be seen slightly different due to those particularities; for example, gay men might be worried about how might be perceived within the gay community, especially if they are in pursue of a partner etc. Similarly, the connection between MS and sexuality can cause extra burden. For example, a participant shared with me her concerns of how disability due to MS interrupts her identity as a butch lesbian which cannot be fully embraced now, due to MS symptoms. Another gay woman described that it feels like a ‘double whammy’, disability discrimination and heterosexist assumptions. Finally, the invisibility of LGBT imagery 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.

Where to from here for the study and results?

Where from here? I like this question because it is a question we tend to avoid during a PhD study. Well, research-wise I want to publish some papers which will enhance knowledge about this topic, even in a miniscule level. But most importantly, I want the findings of this study to inform psychosocial interventions which will involve the MS communities, communities of people living with a disability, and LGBT communities; assist with awareness campaigns, training efforts perhaps; or even just making people aware that there are LGBT people living with MS and these are their genuine, important stories.

I want to thank all the people who took part in this study. I’m extremely appreciative of their willingness to give me the opportunity to listen, and see, their life stories