ESCA VAN BLARIKOM
Multimorbidity in the UK
Historically, biomedicine focused on single disease categories. As a result, many of our current clinical guidelines are almost exclusively focused on managing single conditions. Considering that in the UK, people with multiple health conditions make up most primary healthcare encounters (Cassell et al. 2018), these approaches urgently require critical evaluation.
Most research on multimorbidity, or the co-existence of two or more long-term health conditions, focuses on measuring and identifying disease clusters. This approach falls short in contributing to better care for people who live with multiple long-term conditions now.
As a part of my ongoing ethnographic PhD study into the experiences of working-age adults with multiple long-term health conditions in Tower Hamlets, a socially disadvantaged London borough, I invited four participants to take part in a creative photography project, in which they used images to tell stories about their experiences with health and illness. This followed a series of individual interviews I carried out with 11 study participants, as well as ethnographic observations of healthcare encounters. In May 2022, the small group came together for a research workshop to share some of their experiences of living with multiple conditions. Using three images that participants felt comfortable sharing in this blog, as well as interview data, I will discuss two of the early themes arising from the study: feeling stuck by having multiple long-term conditions and flourishing despite having multiple long-term conditions.
Sarah (age 29) often describes a sense of hopelessness when she thinks about the future. She suffers from depression and chronic back pain, among other conditions, and often spends her days in bed. In a literal sense, she therefore often feels ‘stuck’. However, this sense of ‘stuckness’ also spills over into the existential realm, as she is unable to project a hopeful future for herself. In one of the interviews, she told me:
With the way things are now, I can’t imagine me being happy. For as long as that help and support isn’t there, I can’t, I just don’t see how it can change.
I can’t imagine anything. I think at the moment I’m just trying to get through every day. Uhm… Yeah. I’m just trying to survive day by day. So… Yeah, I can’t imagine a future, or a happy one. I just want peace.
Sarah is living in what Bryant (2016, 19-20) calls the ‘uncanny present’. Her inability to envision a future, ‘or a happy one’, makes her focus intensely on her present suffering.
In the context of living with multiple chronic illnesses, people spend much time every day on the (self-)management of their health conditions. Self-management, which is still seen as best practice for long-term illness, requires people to exert some level of control over their health. Many of the 11 participants in this study, however, report feeling as if they are not in control of their health. A perceived inability to move on from current suffering was an important recurrent topic for many people engaged in this study. Sarah, for example, told me in one of the interviews:
“There are some things within my control, but a lot of it isn’t. So… I’m just kind of, stuck. Ehm… Yeah, I feel like like… I don’t know what else to do. I can’t do a clinical trial, I’m not eligible for it. I felt like that may have been a way out. But, now I’m back at square one.”
Sarah’s medicine box (image 1) visualises this perceived lack of control. It is bulging over with medicine. Interestingly, in interviews, Sarah often expressed her desire for having a magic pill that could cure her. In a consultation with her GP, which I observed, she asked to be re-assessed for a new condition she felt she might have so that she could be prescribed yet another medication, in the hope that this one would finally change her life. However, the caption she created for this image of her medicine box during the workshop reads: “Trapped-Uncertain-Silenced-Side-effects-Disappointment-Scared”. This photo and caption, contrary to what emerged from the interviews and observations, show that Sarah also understands that more medicine may not contribute to her well-being, but rather to a sense of stuckness.
Medicines create a life-long dependency for people on health care services. This dependency on institutions and treatments can lead to a sense of stuckness. People with multiple health conditions are often not just dependent on care services, but also on many other public services, because they are unable to work and receive benefits, or live in temporary housing, like Sarah. Participants stories show that once this dependency is established, it is very hard to wean from it.
Sarah often feels that between work, childcare, and other responsibilities, she does not have the time or energy to prioritise her health. Moreover, she has been on the waiting list for therapy for years and has recently, without explanation, been discharged from her community mental health team. She additionally suffers from chronic back pain that remains undiagnosed. Like many other participants, her care is therefore reduced to taking medicines such as antidepressants and painkillers.
Because the participants in this study have diagnoses that are considered “chronic”, they can often feel like they are stuck. Many people in situations of chronic crises experience this sense of “stuckness” because their futures seem uncertain.
However, feeling stuck is never the full story. Participants often draw on various resources to transcend their feelings of “stuckness”.
Leah (age 35) has multiple long-term physical conditions, like type II diabetes type and asthma, that generally do not cause much discomfort in her daily life. The everyday management of her health is focused more on mental health and coming to terms with difficult past life experiences. Still, she worries about “not getting better enough”, and told me about her fear of “stuckness” in one of the interviews:
“I worry about that most, that I’ll just continue in like, in my view, not getting better enough and like, why haven’t I sorted out my weight and my body image and why haven’t I done this and why haven’t I done that. Because, you know, that’s what I feel I should be doing, why haven’t I achieved more. Uhm… Feeling sort of stuck is definitely something that worries me.”
Like Sarah, Leah worries about feeling “stuck” because she can’t “sort out her weight” and stick to the ‘lifestyle changes so often suggested in biomedical contexts. However, for the photography project, Leah brought an image showing an abstract representation of her body (image 2). As a caption for this photo, Leah wrote: “A sense of self as a sense of home- living in my body (whether I like it or not!)”.
Participants are often expected to monitor and control their bodies through diet, therapies, exercise, and/or medication. This involves a tricky balance between pressures to fulfil a certain ideal image of the healthy body versus being able to accept where they are currently at. Leah’s photo and its caption represent a form of striving for flourishing and well-being that moves beyond the biomedical understanding of what it means to be healthy. This broader view of health can help participants with long-term health conditions, who cannot attain the ideal of cure so often upheld in biomedical settings, to transcend their feelings of being stuck.
Another participant, Aisha (age 23), explained how drawing is a real outlet for her. Aisha went through something of a personal transformation since the start of the study. When I first met her, she was feeling down. Aisha was diagnosed with diabetes when she was 17, and experienced a lot of anxiety about her health. This anxiety was exacerbated by her stressful job at an understaffed nursery, where she had taken up some weeks of sick leave when I first met her. Being off sick from work created a sense of failure, and Aisha often worried about the future.
By the second time I spoke to her, though, she decided to apply to art school, and and has now been accepted. This has given her more confidence in the future. Her first interview was dominated by her fears of future complications. In her second interview she describes her imaginations of the future optimistically:
“I see sort of like, I’ve graduated and I’m sort of like living alone in an apartment that I really, like, worked my butt off for, uhm, and I’m just seeing myself enjoying, like, my design work. Like, uhm, just imagining me working for like, branding agencies and everything that I’ve always found interesting. And just- just thinking about that independence. That joy of living alone and doing what I like.”
For the photography project, Aisha photographed her colouring pens (image 3) to represent a sense of ‘good’. Aisha still worries about managing her blood sugar level, and often feels anxious about the possible complications that might develop if she fails at this. But over time, Aisha has become better able to understand her health conditions in the context of her biography. Aisha spends much time reading and thinking about her health, and through these efforts, she is finding her own balance in the various demands placed on her by having to manage multiple health conditions.
The voice poem below exemplifies Aisha’s struggle to balance these demands. Voice poems are tools for analysing qualitative data whereby phrases are underlined and then put in order of the original sequence (Gilligan and Eddy 2017). These poems allow researchers to identify different voices or subjectivities from which participants speak. I constructed this poem from Aisha’s interview. Here, she talked specifically about her difficulty in (self-) managing the diet required to control her blood sugar, with simultaneously trying to overcome an eating disorder exacerbated by fixating on food.
Why should I stop
Every day I should becelebrating
And I do
I had my binge eating problem
I went to the clinic
I got out
I just started eating
I didn’t care
I was, like
I’m going to eat this
I kept doing that
I started gaining all that weight
I got diagnosed
I was, like, indifferent
I was like, okay
I’m just going to eat
I felt it was doing me no good
I stopped completely caring
I appreciate myself
I am craving
I’m going to go and get it
And eat it.
Eating is not just what we do to sustain our biologies but also linked to celebration and well-being. People with multiple physical and mental health conditions must balance the demands made of bodies by healthy regimes with the demands people feel they owe themselves in terms of happiness and liberation, which for Aisha are important to adhere to because she has been denied pleasure for much of her life.
These images and excerpts from participants’ stories evoke a sense of how people struggle to find meaning in the chronicity of their health crises, sometimes successfully so, but sometimes leading to a feeling of being stuck. These stories underscore the need for a critical evaluation of the way contemporary care services (fail to) meet the needs of people with multiple health conditions. People managing multiple health conditions maintain a balance between the demands their health conditions and striving for flourishing lives.
All names of participants are pseudonyms. All images in this blog post are reproduced with the participants’ permission.
Becker, G. 1997. Disrupted Lives: How People Create Meaning in a Chaotic World. University of California Press.
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