Pain for many is temporary. But for University of Victoria PhD student Jenise Finlay, pain has been a permanent part of her life since she was 13 years old. Yet she has been successful in creating a community with chronic pain, and making it the base of her PhD research where she explores the experience of going through chronic pain and intimacy.
She started working as a registered nurse and an advanced practice nurse in 2014 in Calgary, and has spent many years working in sexual health while navigating her own chronic pain. Chronic pain is a reality for Finlay, but she made her dual perspective on chronic pain and intimacy the basis for her research in Victoria.
Going back in time, Finlay describes the 15 years that it took the medical system to give her an accurate diagnosis of hypermobile Ehlers-Danlos syndrome (EDS) as challenging and lonely. During that time, she also went through several misdiagnoses for her pain, and suffered from progressive musculoskeletal and nerve pain.
On top of everything, she had to give up a lot of things she loved.
“I had to give up a lot of the sports that I loved playing. I was also a musician. And I had to give up playing music as well because I had nerve problems. But absolutely, it was very isolating, especially as a young person, having to give up all these things and parts of your identity and not knowing why,” Finlay said.
To cope with the isolation, Finlay decided to intentionally create a supportive community of people who live with chronic illnesses, which, she said, helped her reconcile with disability and feel less alone. The experiences she has had in this community are helping her to be better informed as a researcher, she said.
After finishing her education and working in sexual health clinics, Finlay couldn’t help but notice considerable concerns related to chronic pain and intimate life. She noticed that chronic pain had a huge impact on relationships and self-image, and that sexual health services are often ill-equipped to address pain-related concerns.
Finlay started her research after identifying a gap she noticed in chronic pain clinics, which often failed to engage with patients’ sexual well-being. She expects to bridge that gap through her research.
She is currently recruiting participants who live with chronic pain between the ages of 18 and 49. She wants to explore how chronic pain has an impact on identity, relationships, body image, and sexuality, as well as their experiences in navigating the health-care system. She expects to conduct in-depth interviews with the participants for her research.
“There’s just a lack of connection, resources and support for these people to feel less isolated in their issues. But there’s a significant loss of identity, and that can affect relationships as well and body image too,” she added.
Beyond research, Finlay is a vocal advocate for people living with chronic pain and EDS. She points to major systemic gaps in Canada, particularly in diagnosis and coordinated care.
She sees diagnosis as the most important first step in navigating chronic pain. She said that without it, patients struggle to access necessary information, support and communities. She says that many often fall through the cracks of the health-care system, even though EDS is more common than many realize.
“So we have a significant lack of medical geneticists who are willing to see people who may have hypermobile Ehlers-Danlos syndrome. What we really need is like an EDS clinic that’s publicly funded, that has all the different specialists, has genetic testing, has social support, all those kinds of things,” she explained.
Through her PhD research, Finlay hopes to raise awareness and provide education for both health-care providers and people living with chronic pain. Once finished, residents of Greater Victoria and beyond can watch a short documentary film that shares the experiences of those who participated in her research. She will also develop educational resources informed by patients and health-care providers, supported by a patient advisory committee.
“My main message is that we do need to change the narrative around people with disabilities and chronic pain and sex, because they do have sex. We need to be talking about it, reducing stigma, and providing the support people actually need.”