For people experiencing chronic illness, moments of peace may feel out of reach–mired under debilitating pain, fatigue, or mobility issues. Chronic Illness is not only physically debilitating, but mentally taxing as well – as it often leads to feelings of deep isolation and despair.
IN·JOY is a small device and app built on the communal happiness of people disabled by chronic illness. Each day generates a new prompt that queries the brain into introspective gratitude, and each person shares their own experiences as it relates to that day's ponderings. IN·JOY uses the emerging wellness model that uses neuroplasticity and nervous system regulation to create an opportunity for the individual to regain a sense of wellness.
Chronic health conditions place a significant burden on US citizens and the US healthcare system. The medical system in the United States is ill prepared to care for the number of people with chronic conditions, especially with the meteoric rise in disability due to COVID-19. According to Frontiers in Neurology, that on top of debilitating long-covid symptoms, "COVID-19 is being linked to brain health impacts...The situation need not be medicalized but rather clinically managed in terms of improving resilience for an over-stressed nervous system." This brain injury is exacerbated when patients get stuck in nervous system activation due to Medical Professionals being unable to provide them with a clear path back to health.
However, an emerging model of wellness that uses principles of neuroplasticity and nervous system regulation shows that a brighter future is possible. Neuroplasticity is the ability of the brain to form and reorganize the synaptic connections between neurons – put more simply, the brain's ability to process and "rewire" new information. Neuroplasticity is an essential component of the brain's response to injury, including traumatic brain injury (TBI) and stroke.
IN·JOY is a digital community that seeks to soothe nervous system dysregulation in people experiencing chronic illness, providing an opportunity for the body to heal.
The majority of chronic diseases are accompanied by symptoms of more or less pronounced dysautonomia (nervous system dysregulation). Therefore, the ideal participants are people who self-qualify as someone living with chronic illness. Through communal sharing of individual joy, the focus of IN·JOY is to downshift an overactive nervous/immune system by sharing moments of joy and radical self-acceptance.
IN·JOY consists of two distinct parts to flexibly support people through points of nervous system activation during their day. The main interface is an application that offers daily introspective prompts. From the app, they can contribute voice-recorded or written responses to the daily prompt and share with the IN·JOY community. As moments of stress arise throughout the day, the person can use the accompanying small handheld device to ground themselves. The IN·JOY device vibrates with each new contribution to the daily prompt, which can be unveiled with a simple tilting motion. The ability to co-regulate the nervous system with people sharing the same health experience creates a feeling of security and acceptance.
Throughout my career, I have been exploring the intersection between design, healing modalities, and socially impactful work. Over the last few years, I, like so many others in recent history, experienced a health crisis that gave me an intimate purview to the complexities of the US medical system. These curiosities and life experience led me to study at the Copenhagen Institute of Interaction Design in Costa Rica in 2021. In the last year, I have had the chance to explore projects focused on self-facilitated forms of healing. Although systemic barriers within healthcare systems need to be addressed, the need for low-cost and immediately implementable health offerings is high. For IN·JOY I wanted to explore how participation within a system was an act of recovery in one's own life, and an invitation for someone else to recover.
Research and Insights
During the course of research for this project, I conducted in-depth interviews with 12 participants, including people who experience chronic illness, Medical Professionals in both western and eastern methodologies, and a Death Doula. The participants I spoke with experience complex disorders that are notoriously difficult to manage – namely, Multiple Sclerosis, Fibromyalgia, Mast Cell Activation Syndrome, and various form of Arthritis. I also conducted desk research that included scouring numerous academic journals and detailed reports on the management and treatment of chronic illnesses.
Based on data from the Center for American Progress, COVID-19 likely resulted in 1.2 million more disabled people by the end of 2021. Brehan Crawford, a doctor of Traditional Chinese Medicine that I met in Portland, Oregon, illustrated that the problem wasn't solely based on the volume of patients within the medical system; it was that the medical system contributed to the severity of their symptoms. He shared, "A big part of what contributes to the suffering that patients with chronic illness experience is the ongoing way that they are traumatized by dealing with medical providers and medical offices." This medical trauma contributes to nervous system hyper-activation, which creates blockades in the path to recovery.
When speaking with individuals experiencing chronic illness, I asked what helps them manage the stress of their condition. All of them referenced varying manifestations of community. Gabrielle, a woman with Multiple Sclerosis shared her experience of the emotional burden that living with chronic illness can cause. She said "I just kept hearing…it'd just be easier to die…so people with partners who aren't on their side, or maybe they are going through this totally alone. I really, really fear for them. Because if I didn't have a really supportive dad, a fiance, and a goofy best friend, I don't know what would have happened to me."
However, like Gabrielle mentioned, not everyone has access to these communities. This is especially true of people who have yet to receive a diagnosis. It took on average 10 years from the onset of their symptoms for the participants I spoke with to receive a diagnosis. This point illustrates another hole within the medical infrastructure. Our access to resources and community depends on our ability to name our experiences. The current model is so dependent on this naming convention that people go without any resources until, and if, they receive a diagnosis.
All of this led to my initial concept direction – how might we help someone experiencing chronic illness feel connected to a community in a way that regulates their overactive nervous system.
Concept Co-Creation and Prototyping
With a clear concept direction, I set out to bring life to the idea. In summary, I led three brainstorming sessions with classmates, conducted co-creation sessions with six people experiencing chronic illness and three Medical Professionals, and facilitated usability testing sessions with target candidates.
From the initial brainstorming sessions, the concept of communal co-regulation of the nervous system through a small handheld device was born. I tested the idea with participants who experienced chronic illness to uncover if the idea felt intuitive and interesting. I was met with a lot of positive feedback from the participants about this direction. Several people referenced that the form-factor intuitively made sense to them as they were already carrying 'stim objects'. Stimming – or self-stimulatory behavior – is repetitive body movement or noises. Neurodivergent and/or disabled people will often carry objects to fidget or "stim" with, to center themselves when in overstimulating circumstances.
I always considered community to be an open system, one in which participants can freely express themselves to one another at any time. However, a conversation with Emily Eliot Miller, a Death Educator and Grief Counselor, shifted that perspective. She had this to say about community, "for me, [community] is a listening practice. It helped me so much to feel less alone…and to hear other people's insights." What this meant for the content strategy of IN·JOY was to develop a closed loop communication system – one that prioritized listening. This means that you can contribute, and listen to the responses of others, but you cannot directly respond to other people within the community. This hypothesis was tested and I found that participants did not require the need to know the identity of the other community members, nor did they feel the need to respond directly to their contributions.
I designed higher-fidelity versions of my touchpoints and brought them back to the participants for final usability testing and feedback. One participant, Kayla, who experiences an aggressive form of arthritis shared this, 'this is so impactful, because, if I'm waking up in the morning, [this person with Arthritis] might also be feeling super stiff in bed, but that doesn't necessarily stop their mind from trying to find something happy to start their day.'
Oftentimes a dysregulated nervous system, like in those experiencing chronic illness, robs us of our ability to experience ease. From these usability testing sessions, I learned that witnessing people in similar health circumstances share joyful moments from their lives was radical. During the co-creation sessions, the participants said they felt less alone, and more inspired to see more joy within their daily lives.
Chronic diseases are frequently accompanied by autonomic dysfunction, which noticeably deteriorates the quality of the patients' life. The current medical infrastructure does not have the resources to successfully diagnose, nor treat the number of people with nervous system disorders. Which is why there is such a need for patient-led therapeutic interventions like IN·JOY. Many researchers indicate that a decrease in dysautonomia intensity has a direct effect on the progress of the underlying disease and undoubtedly contributes to the improvement of general health condition or to symptom remission. Therefore, there is a vast opportunity for the implementation of nervous system regulation tools for the treatment of chronic illness.