The experience of pain across these diverse peoples were entangled with and shaped by five key interrelated areas of experience: their social locations, identities and related barriers they faced; their experiences of violence, trauma and related mental health issues; their experiences of discrimination, stigma and dismissal; their experiences of inadequate and ineffective health care; and the impacts of these intersecting experiences, specifically on employment, income and their social lives.
Pain was shaped by and entwined with participants’ social locations and identities and related barriers. These diverse groups of people were brought together because of a single aspect of their social location: identifying as LGBTQ2S, identifying as Indigenous, or being a newcomer or refugee to Canada. While participants identified the ways in which they aligned with the group to which they had been invited (e.g., most newcomers specified from which country they had immigrated), they also often offered multiple dimensions of their social locations and related identities that were inclusive of, but not limited to, the group they had been invited to represent. Indeed, some participants also identified with one or both of the other groups: a transwoman participated in the Indigenous focus group; several Indigenous persons participated in the LGBTQ2S focus group and so on. Importantly, each participant in both the LGBTQ2S and the Indigenous focus groups made clear statements of identity related to these groups; whereas participants in the newcomer and refugee groups did not, perhaps reflecting varied conventions for introductions and the context. Notably, whereas the Indigenous Talking Circle was guided by a protocol for introductions, and it is common practice within such protocol to name one’s clan, community, territory, or nation, most of the Indigenous participants stated their relationship to pain in their introduction. This was unusual, but perhaps in part this was explained by the fact that the focus group facilitators (a local Indigenous Elder, and a researcher) were familiar to most and had introduced themselves formally on other occasions. Also notably, no participants in the refugee and newcomer groups shared aspects of their gender identity or sexual orientation perhaps in part because in many of the cultures that the newcomer participants were representative of, terms such as ‘gay’ or ‘trans’ may not be part of the cultural vocabulary, even in the case where they align with those identities (28).
Across these diverse groups, participants expressed the complexity of identity and social location, and the complex relationships among them.
I’m trans, I’m non-binary, I’m Jewish, I’m a singer, I’m going through transition right now and that’s something that’s been on my mind a lot is that my voice is changing and I’ve been grieving my singing voice a little bit so just thinking about that before I got here today (LGBTQ2S-1-1)
For some, pain, and disability rights were part of their described identity. “I identify as queer and non-binary and I also identify as a crip, sick, and disabled” (LGBTQ2S 1–6). Indeed, as noted, most of the Indigenous participants opened with a declaration of their long history of pain. “My name is M and I’ve been living with chronic back pain since 1990” (Indigenous 9).
Perceived identity and social location were described by many as acting as threats to safety and as barriers to pain treatment and support. LGBTQ2S 1–6 went on to say “I’ve had a lot of interactions with the healthcare system and I’ve definitely come across times where there weren’t resources that really reflected who I was”. Another said:
As an Indigenous person I always feel like the health, in totality, the healthcare system is a barrier to me. There’s always a risk of – I always feel, I have to measure if there’s a threat against my body or even my family just because somebody could make a racist assumption about me. (LGBTQ2S 1–10)
Specific identities or social locations were associated with unique barriers to treatment and support, including specific threats to safety such as accessing gender-affirming care.
I am gender fluid, looking at taking testosterone and I’m curious about, broaching that with my doctor who’s already very binary focused and in tandem with all of the mysterious things that cause pain and mental health issues… and then the layer of just very much like not knowing if I’m safe, being seen or willing to be asked to be seen or whatever is a barrier as well (LGBTQ2S 1–7)
Participant’s social locations and identities were directly associated with specific structural barriers. For example, Indigenous participants’ access to services varied according to whether or not they had status2 under the Indian Act.
When I say I’m Native I have to say non-status. I have to actually specify that, that I’m non-status because… my biological father is not on my birth certificate. I’m actually persecuted by both sides, by the Native side and the Canadian, white Canadians. And I kinda get thrown around by both of them because I’m not either one. (LGBTQ2S 1–11)
Similarly, newcomers’ experiences varied with their status governed by legislation related to immigrants and refugees, the benefits to which they were variously entitled, and their experiences with related processes. For example, one newcomer attributed her experiences of chronic pain with the social isolation she experienced as a refugee.
She says before she [came to Canada], when she was in [her country of birth] she never feel anything, she was relaxed enjoying social life, meeting each other occasionally or meeting family, friends, whatever, go to church, go to mosque, whatever, she never feel that. But since she came here all the pain start to come out. (Translator for Newcomer FG2)
Many newcomers described being unable to access treatment due to cost. Newcomers without strong English skills described difficulty in even describing their health issues and pain, particularly given that many health care settings do not provide access to interpreters, with consequent under treatment, delayed treatment, mistreatment and emotional impact.
Emotionally it’s very hard when you can’t, when the services can’t understand you and doctors don’t understand you… (Newcomer 2 − 1)
Pain was shaped by violence, trauma and related mental health issues. In all groups, many associated their chronic pain with their trauma experiences and related mental health issues.
I’m a refugee … from [place]. I went through so many difficult things. I was raped and kicked, I was being kicked with boots, soldiers were kicking me with their boots, I don’t know how my life came to be so broken down. After that I had no peace. I came here, I was happy that I’m here…I thought again I’m going to experience joy, happiness but its not easy. I’m going to hospital, just to the hospital and I thought my kids were going to move and come and stay with me in this country. My kids never moved and follow me. My head is not working I have high blood pressure, most of the time the pressure will go up to two fifty, three hundred. I’m taking drugs but the pressure does not come down. And the pain, I’m telling you… All night I’m walking (pacing) in the house while others are sleeping and I’m awake. Then I sleep in the daytime and we are supposed to live as a family and do chores and other things that means we are living as a family, but I can’t because I have not slept all night. (Newcomer 1–6)
I live with chronic pain and had pain probably my whole life and diagnosed with learning disabilities, as well as chronic mental illness and trauma, so all those kind of go together. (LGBTQ2S 1–4)
..in addition to like um physical kind of pain stuff, like mental health struggles and complex PTSD and trauma is something I’ve lived with most of my life as well and I think it’s been like a big source or like really important in my um, my resulting chronic pain. (LGBTQ2S 1-NS)
Pain, discrimination, stigma and dismissal. The participants’ experiences of pain were described in ways that were inseparable from their experiences of discrimination, stigma and dismissal. As suggested earlier, throughout the focus group, and during the one day workshop, many in the LGBTQ2S group described how cisnormativity and heteronormativity that pervades multiple systems influenced their experiences, and thus the meaning of pain.
…I wanted to share…about being a student and being at post-secondary institutions and experiences like working with the disability resource centres on campuses that I’ve been at and with various professors and others that are above [laughs] me as a student. And also in combination with my fibromyalgia, which is chronic and constant kind of pain but also having PMS and menstrual issues combined with the gender identity stuff makes just a whole other mixed bag of things to limit you in sort of access to education and to acceptance, yeah. (LGBTQ2S -NS)
All of the Indigenous participants described experiencing race-based discrimination, with most describing being assumed to be “drug seeking”, regardless of whether they wanted medication or not.
Well I used to use drugs…I don’t do that anymore. I’m on methadone now and I’m in recovery, so. But…because I’m on so much methadone… it’s hard for me to manage my pain…when I do go to the hospital and stuff, they look up my past history and my drug life, and …they always bring that up. It’s always like, they won’t give me the medications that I should be getting because they think I’m drug seeking. (Indigenous 1).
Participants described how such assumptions were interrelated with their experiences of not being believed which in turn deterred them from seeking and getting care:
For me, I’m having a hard time to ask for help to any doctors because of how they treat me, like [they] say I just want to get pain medication just to get high and all that, and I’m really in pain and I’m telling them and they don’t believe me and that, and I’m having a really hard time right now. It is hard for me to ask because of all the things I went through with the doctors and that. They treat me like…I’m just after the drugs to get high and that. They don’t believe me, that I’m in pain. I’m trying really hard to ask for help and it’s really hard for me to ask for help because of how I was treated before. (Indigenous 3)
These experiences of discrimination, stigma and dismissal were entwined with their experiences of inadequate and ineffective health care, together shaping their understanding, experiences and meanings of pain.
Inadequate and ineffective health care. Overwhelmingly, most participants described being unable to find effective pain management.
Nothing has been working for pain management. I’ve tried massaging, I’ve tried IMS, I’ve tried acupuncture, I tried medicinal marijuana, I’ve tried like stronger medication, I’ve tried street stuff and nothing is making it any better. (LGBTQ2S 1–9)
I was finally diagnosed with osteoarthritis in two places in my foot and I’m presently waiting now to see the orthopedic surgeon, which … is going to be another year or year and a half before I’m getting some help there. At least now I’m getting treatment, like I have physio every Monday, I have Voltaren cream that I can put on my feet; whereas for six years, no physio, no cream, no pain medication. It just kept escalating and escalating. And I think part of the reason why it is as bad as it is now, is because there was nothing for six years. No physio, no suggested anything for it; just waiting for the next doctor. (Indigenous 7)
Most were only able to access pharmaceuticals and many in each group described this as very limited and problematic.
Finally, they put me on 2 mg of Dilaudid twice a day, once in the morning and once in the afternoon, and they told me I could go on 1 mg four times a day, and it was like wow, yeah, okay [sarcasm]. So, I take several different painkillers, but I don’t want to be on medication; I want solutions. I want to be fixed. (Indigenous 6)
…like pharmaceuticals don’t really work for me and like in my experience like very few practitioners are willing to talk about any other options and are willing to work with like other types of practitioners (LGBTQTS)
I go to complain to the doctor and he give me sleeping pills and I say, no, I don’t want to do that, it control me. And he always give me, give me the prescription, prescription all the time but he don’t give me the specialist doctor. (Newcomer 1–3)
Participants recounted being disbelieved regarding the existence of pain, their level of pain and the cause of their pain, and dismissed regarding their concerns, needs and preferences. In each group several participants described how the impact of being disbelieved and dismissed had led to misdiagnoses and mistreatment.
Pain. I honestly don’t know what it’s like to live without pain. I had back surgery a long time ago…They wanted to put those rods in my back and I told them natives tend to reject those rods, so I don’t want to go through that. They wouldn’t listen to me. Well, at the fourth month after having them in me… I started feeling my body was rejecting the steel. I went in and I told them and they did not listen to me. They said that it was in my head, that …I was trying to get drugs. …at the year mark of them being in my body, I was rushed to emergency in [another community]… they had to open me up as soon as I got in there and there was steel and pus and everything, like large amounts… For somebody to have two big jugs of liquid pus come out of them, there has got to be something that can be done before this, and where they had those bolts, it broke the bones, it ate the bones. So, I’ve got nine bones in my body that are gone because of this one doctor ... He crippled me. (Indigenous 4)
A newcomer described a six-year quest for treatment of pain. She described being dismissed repeatedly by physicians in primary care, and not believed by other healthcare providers.
So, I told myself I need to go to emergency not [a] walk in clinic because it will take me a long time. So, when I went there, I told them that I have strong headache and I show them the place exactly the place. And I told them that I need, I need help because I can’t help all these pain. The doctor he didn’t believe me at first, he told me you just have a migraine…I told him, no, its not that, I feel something in my brain it push my brain away. But he didn’t believe that, he like I felt he’s just feels that I am like acting like I am…
R: You are faking it?
P: Yeah and my husband told him can you please do a CT scan, something better to, to know what she has. Like when they do the CT scan they found the tumor that took all the right side. (Newcomer 2–3)
Many experienced difficulty knowing what to do and navigating the system, reflecting how systems are not organized in ways that are tailored to needs. One newcomer described:
My doctor, after taking x-rays and, yeah, trying to figure out what it was- the first thing the doctor says is “go to a physiotherapist” and then you do that. But you have to choose the physiotherapist, you have to find out which one would be better for you and where to go – you have to do all the research. It’s not that they say, okay, this physiotherapist works with me, this doctor, and I know this one is better for this arm and this one is good for the knee, no, they don’t give you zero, nothing. And you have to do the research, you have to figure it out… (Newcomer 1–3)
The inadequacies of health care shaped the meanings of pain for participants and worked to deter access to care, and to worsen the impact of pain.
…every time I go to a new practitioner I have to like tell them my whole like life story all over again. And it’s like really exhausting…it’s like I have to be really vulnerable and if they’re not trauma-informed it’s just an awful experience, to be that vulnerable they’re kind of just like seeing things through a certain lens and, yeah, I don’t feel believed or like I’m going to get, like the options they present aren’t going to be like what I’m looking for. (LGBTQTS)
The impact of chronic pain: Complex and multifaceted. Participants described the effects of chronic pain in ways that demonstrated how the experience and impacts of pain emerged from the complex intersections among the emotional, mental, physical, social and economic dimensions of their lives as they endured the consequences of multiple forms of stigma and discrimination and structural barriers across systems. For example, one newcomer continued her quest to improve her English in order to deal with a cascade of events stemming from inadequate interpretation.
…it’s a very hard way because the government they took away my kids – fifteen years I have no kids, once a year, one hour, they only let me visit my kids, it’s hard. And it’s because of how the interpreter translated, all I said when I was at the psychiatrist office is that my life is so hard that it looks like it’s better if I die. But that does not mean I wanted to kill myself, I was just trying to say that my life was so hard that’s all. Life not easy for me, die better than to live. But the interpreter they say I want to kill myself … and after they took me, put me in an asylum for four years. They destroyed my life, I’m so upset and I say I’m not crazy, I’m normal, I’m not crazy and I don’t want to go there, but they put me in and gave me a lot of pills, a whole bunch, and they put me in and that’s why I’m very upset. And I said, no, I stop to go to counsellor, I stop going to anything and I say, no way, until when I can speak by myself (in good English) okay? (Newcomer 1–8)
Specifically, across groups, participants emphasized impacts of the intersections of pain and barriers to support on their mental health, employment, income and their social relationships:
I come from my country, I run away from the war, I came here but now see…. I just want to be human, I want to be like normal people. I don’t want to be like people who stay inside the home feeling scary, scary all the time. (Newcomer 1–5)
…my experience of living with chronic migraine is the most limiting of the things that I live with and it’s caused really intense social isolation which isn’t the greatest for my mental health. (LGBTQ2S 1–8)
The effects on employment included enduring additional pain during work, the challenges of fulfilling work expectations, and for many, being unable to get or continue working.
I have been in pain for well over 20 years so I’ve kind of learned to just grit my teeth and cope kind of thing. I was working. My job was really, really important to me [sigh]. So, I went from working eight hours a day down to six hours, down to five hours, to four hours, and I had to leave my job about three weeks ago because I just, I couldn’t even get in a two-hour shift anymore. (Indigenous 6)
I do nails as a job but now I can’t hold the hand to do nails, so I have to stay home. I can’t work (Newcomer 1–3)
…in relation to chronic pain I’ve been [a specific service provider] and actually just had to, at the end of last year, had to give up my license because I can’t afford to carry on that profession anymore. (LGBTQ2S 1–8)
The economic impact was profound across the groups, both as a consequence of the impact on employment, and as a consequence of the costs of support and treatment.
I’ve had pain since childhood. I became a lot more disabled by it in my early twenties and have been going to school, in quotation marks, part-time to survive, because I can’t work and now I can’t go to school. (LGBTQ2S 1–7)
Many simply could not afford treatment, even when they found modalities that were effective. A newcomer who had debilitating pain post surgery and chemotherapy for a brain tumour had to stop accessing treatment. “…it was paid from, from me and I just didn’t have any more money and I had to stop going”. (Newcomer 1–2).
I had a referral to the podiatrist…so I go to make an appointment and everything and then the podiatrist says you have to pay $50 up front …I’m like what? I’m on disability, plus I have status. So, the lady at the reception…said well you can get a form filled out from the Ministry to get it paid for. So I go through all the trouble to get that done, call to book an appointment telling them that I have the form filled out so the Ministry can pay for it, well you have to still come, bring $35 cash to pay for the filing fee…So I never did see the podiatrist because it just wasn’t affordable. (Indigenous 6)
Participants’ experiences of chronic pain were described in relation to others, including family and community members, both in terms of how others influenced their experiences and how their chronic pain affected others.
I’ve spent more than half of my life being in severe pain. I’ve had fibromyalgia for 26 years and I had to relocate because of it. When we lived in (another community) I spent a lot of time in the hospital. My marriage ended because of my health problems. I had a very spoiled husband who for the first four years of our marriage came home and his dinner was made, he didn’t have to lift a finger to help, and then when I got sick he had a hard time with it. (Indigenous 6)
Many (mostly women) were caregivers. For example, one newcomer described the impact of caring for her daughter, and how pain in turn affected her caregiving and their wellbeing:
I have a little girl in a wheelchair and she doesn’t walk, is non-verbal. She’s not such a little girl and she’s getting heavy. This has been going on and on and on for so many years – she’s fourteen. So, its many years of lifting but now instead of being both sides of my body now I was completely restricted in one and its really damaged… And the stress from [paying for treatment] and the stress of having to spend more money on my daughter than me because you always put others first. (Newcomer, 1–1)
Another woman was at a loss regarding how to manage in the face of her inability to work, her debilitating pain and the need to care for her children on her own.
I’m stuck and I’m stuck and that’s why I try. I try to go to school (for upgrading skills) but I cannot go to school because I have three children. I’m a single mum with three children …I ran away from [an abusive husband] that’s why I have to be careful for my children (Newcomer 1–5)
2Indian status is the legal status of a person who is registered as an Indian under the Indian Act 29. Act I. Indian Act, RSC 1985, c I-5. 1876.. The Indian Act is a race-based act of legislation that categorized Indigenous persons and governed all aspects of their lives, and remains in force today, with a few revisions since 1885.