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Living with Uncertainty While Searching for Answers
“I know these things are connected somehow. I just need someone to help me figure out how.”
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This persona reflects experiences shared by patients navigating complex, evolving, and often difficult-to-explain physical and mental health concerns. It highlights how uncertainty, neurodivergence, financial strain, gender, and challenges accessing diagnosis or support can shape healthcare experiences. Kai does not represent all neurodivergent people, all transgender or queer patients, or all people living with chronic illness or financial hardship. Rather, this persona brings together patterns shared across multiple patient interviews to explore how these experiences can intersect in healthcare.
For some patients, healthcare is less about managing a diagnosis than trying to understand what is happening in the first place. Patients may spend months or years searching for answers while simultaneously managing employment, finances, housing, relationships, and the practical realities of daily life.
Making sense of these experiences often becomes work in itself. Patients may spend considerable time researching symptoms, tracking changes, preparing notes or scripts, gathering records, and trying to connect information across providers and appointments. Much of this work happens before, between, and after clinical encounters — and often goes unseen.
For some neurodivergent patients, communication itself can require significant planning and effort. Fatigue, brain fog, anxiety, or cognitive differences may make it difficult to explain symptoms, identify priorities, or process information in real time. Financial pressures and prolonged waiting for diagnoses, referrals, or disability supports add another layer of complexity.
This persona supports reflection on:
Kai’s story highlights several important tensions:
This persona invites reflection on what becomes possible when communication, curiosity, and making sense of symptoms become shared work rather than burdens carried primarily by the patient.
Living with uncertainty is not simply about waiting for a diagnosis. It often involves carrying unanswered questions while continuing to navigate work, finances, relationships, and everyday life. Kai’s story invites us to consider how healthcare teams can better support patients while answers are still unfolding.
I had the same family doctor growing up. In university I started going to walk-in and sexual health clinics, they felt less judgmental and easier to access. I had a specialist during my gender transition who was great, I still see them occasionally. Last year, my sister got me connected with a nurse practitioner but we’re still getting to know each other.
I’ve been trying to figure out what’s going on with my health for awhile. I’m pretty sure I have chronic fatigue syndrome or long COVID, but I’m still waiting for answers. I deal with brain fog, fatigue, chronic pain, increased sensitivity, and mental health stuff too. I never feel fully awake or alive anymore. It feels connected somehow, but the pieces still aren’t coming together. I finally got diagnosed with autism after five years of waiting, but my doctor still doesn’t seem to acknowledge that. It’s just been really hard. I’ve been unable to work and trying to get my AISH application approved, but it seems like doctors know less about how AISH works than I do.
I’m pretty much an open book. I’ll tell providers about my mental health, my transition, and my drug use history. I’m just trying to get the help I need, but I don’t always feel fully believed. A lot of what I’m dealing with isn’t visible. Sometimes I leave appointments feeling that they think I’m making things up or that things aren’t as bad as they are. Being on the spectrum, having ADHD, brain fog, anxiety and other stuff makes communication really hard. I can know exactly what I mean, but then not know how to explain it in a way that makes sense to someone else. Or I’ll forget to mention something because there’s too many things. It seems like I’m expected to communicate super clearly and quickly, but I’m struggling to make sense of it myself.
I think they have good intentions and I don’t think they mean to be dismissive. I’m still building a relationship and trust with my nurse practitioner. I guess things could be worse, I’m just not 100 per cent sure I feel understood most of the time. Appointments tend to feel like a lot of work and not a lot of movement. I’m trying to figure out when I should talk about physical health stuff, mental health, or the paperwork, and the cost of everything, but also I need to make sure things are moving forward. Being poor makes everything feel super urgent. It feels like they understand I’m waiting but not really the urgency of what waiting means when you’re broke today and worried about tomorrow.
Listen to Kai describe how they feel about their care.
Audio placeholder — a recorded narration of Kai’s story for accessibility and engagement purposes.
I’ll spend hours researching symptoms, medications, forms, or just trying to find free resources. I basically script my appointments. I’ll write notes and questions, and sometimes just read right off the page. There’s just too much to keep track of.
Even though I’m prepared it feels awkward figuring out where to start. Like I’m waiting for her to ask me questions and she’s waiting for me say stuff. It kinda feels like when you’re at a drive-thru and they ask “is that all?” and then you’re thinking oh wait and one more thing, but they’ve already moved onto the next person. A lot of the time I’m trying to decide what I can live without having addressed.
And when it’s all over, I’m exhausted from all the masking, planning, and tasking, and still don’t really have the answers I need.
Listen to Kai describe how they prepare for appointments.
Audio placeholder — a recorded narration of Kai’s story for accessibility and engagement purposes.
Listen to Kai describe what they need from their healthcare team.
Audio placeholder — a recorded narration of Kai’s story for accessibility and engagement purposes.
These questions are intended to encourage individual reflection on Kai’s experience and identify opportunities to improve the quality of care for people with similar experiences.
The quality dimensions provide a common language for understanding quality as it should be experienced by people.
The questions that follow invite you to consider Kai’s story through the interconnected dimensions of People-centred, Equitable, and Effective, while recognizing that other dimensions may also be relevant.
The wholistic preferences, needs, and strengths of people and communities matter.
Kai is living with uncertainty as neurodivergence, physical and mental health concerns, financial strain, and the demands of daily life intersect. They invest significant time and energy preparing for appointments and translating their experiences into words, often leaving appointments exhausted and still uncertain. Kai hopes healthcare providers will recognize this effort, communicate in ways that work for them, and take time to understand what they are experiencing and what matters most.
What aspects of Kai’s lived experience, communication preferences, and priorities must be understood to support care that reflects what matters most to Kai?
Services see and respond to the preferences and needs of communities to reduce and prevent unfair differences in experiences and outcomes.
Kai brings deep knowledge of their own experiences and has developed many strategies to navigate healthcare. Yet communication differences, invisible and evolving health concerns, identity, financial strain, and the consequences of waiting can shape whether they are believed, understood, and able to access the care and supports they need. Kai hopes healthcare providers will recognize and respond to the broader circumstances influencing their health and ability to access care, not only the concerns raised during a single appointment.
How can healthcare teams and systems recognize and respond to the diverse identities, circumstances, and strengths that shape Kai’s experience of care?
Decisions are based on current evidence and lived experience.
Kai brings extensive lived knowledge, research, and careful observation of their symptoms to healthcare appointments. Although clear answers may not always be available, they hope their healthcare team will explore what they are experiencing with them, ask questions that help identify patterns and priorities, and bring clinical knowledge together with Kai’s experience to determine meaningful next steps.
How can Kai and their healthcare team bring together Kai’s lived experience with clinical knowledge to support shared understanding and determine the best way forward?
Are there other quality dimensions that are also relevant to Kai’s experience?
The Alberta Quality Dimensions for Health are one part of the Framework for an Integrated People-centred Health System. The Framework also includes enablers, which create the conditions that support quality care, and shared responsibilities, which describe how we show up with and for one another.
Explore the Framework to learn how the dimensions, enablers, and shared responsibilities work together to support an integrated people-centred health system.
These questions invite you to consider how the insights gained through reflection and exploration could inform improvements within your own practice, team, organization, community, or the broader health system.
These resources build on the reflections and insights gained through this persona and support team discussion, quality improvement, and a deeper understanding of this topic.
Facilitate team learning: Continue the conversation with your team using the Persona Facilitation Guide: Open the Kai chapter (future link page/pdf), which includes facilitation tips, discussion activities, and planning tools.
Support improvement: Learn how you can support providers using the personas for quality improvement with the Physician Practice Improvement Program (PPIP) Fact Sheet: Personas (future link). Also, check out the following Health Quality Alberta resources:
Expand your knowledge: Explore additional clinical, community, and educational resources related to the topics explored through this persona.
These questions are intended to encourage reflection on Kai’s experience and help make connections with your own experiences or those of someone you care about.
These resources build on the reflections and insights gained through this persona and provide additional information and resources related to this topic.
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