Joy Isn't a Reward for Healing

Dr. Talia Cohen and Alyssa Dietz, PhD, sit down for an ieso Conversation on chronic illness, identity, and why mental health support has to be designed into the chronic care experience from the start, in partnership with those with lived experience.

This conversation has been lightly edited and condensed for length and clarity.

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How lived experience shapes better chronic care

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Dr. Talia Cohen – Dr. Talia as she's known to her 17,000 followers – was first diagnosed with a chronic condition as a teenager. For years, she kept it hidden. But during her psychology PhD, her symptoms became harder to manage. Over time, that led to feeling isolated.

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"It wasn't common in a PhD program to see others who were at the hospital multiple times a week or managing these conditions like I was," she reflects.

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So Talia started posting about her experience on Instagram to help her cope. Then, something clicked: her combination of academic training and first-hand experience filled a gap that neither alone could.

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"I became really passionate about how we need lived experience at the table to build products that people actually use. If it's not clear that the perspectives of those actually experiencing it day to day are embedded within the product, it's hard to connect with a service, an individual, or a product."

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Alyssa Dietz, PhD, Head of Clinical Strategy at ieso, agrees. "The whole continuum is the best place to work with lived experience partners, but there are some really key moments where we can test things," she says.

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For example, whether a product is designed to be used with a patient's specific symptoms, whether voice input works better than text for someone managing chronic pain, and whether progress tracking is actually measuring what matters. Even when preparing for research studies.

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"Making sure the protocol is thoughtful and inclusive, minimizing harm wherever possible, and ideally contributing to flourishing – not just minimizing harm, but making it as positive an experience as possible."

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That word – flourishing – is something many tend to overlook.

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"Joy is not a reward for healing," Talia points out. "It's what facilitates healing. And that's not the message that people with chronic health conditions are getting."

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The impact of being gaslit into thinking "it's all in your head"

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Nearly everyone living with a chronic condition has internalized some version of this toxic message – from a physician, a specialist, a family member or friend. But the damage cuts deeper than emotional dismissal.

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"It interrupts your ability to accommodate yourself, which is absolutely important when you have a chronic health condition," Talia explains. "It interrupts your ability to advocate for your needs with others, your ability to move through the grief cycle of living in a body that feels bad a lot of the time."

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When outside forces consistently reinforce doubt, it becomes harder to act from an aligned place. And harder to get needs met.

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"Patients are the experts on them and their experience," Alyssa says. Using that expertise means listening without judgment, using their language to help build connection and trust, and approaching care as a genuine partnership.

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Mental health and physical health interact, but they don't cause each other

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This distinction matters, and it's frequently collapsed.

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"Oftentimes people with chronic health conditions receive the message that their anxiety or their depression caused their symptoms," Talia says. "Many, many people have anxiety and depression and don't develop chronic health conditions. And having a chronic health condition is a really anxiety-provoking and at times sad thing."

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"We need to really be talking about how mental health and physical health interact with each other, rather than cause each other."

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"Exacerbate" is a more accurate and less stigmatizing frame. The question isn't whether stress or anxiety caused the condition; it's how to work with stress and anxiety so they don't make physical symptoms worse.

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"That partnership stance is more appreciated and I would hope feels more considerate and truthful to the person's experience," Alyssa says.

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Rebuilding identity when chronic illness changes everything

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A chronic health diagnosis doesn't only change how someone feels physically. It reshapes how they see themselves, their relationships, their work, their world, their future.

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Start by identifying the person's values, Alyssa recommends. "What do they really care about in life? What's important to them?" The work is figuring out how to keep moving toward those values given their specific health journey. That might mean adapting what those values look like in practice.

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"It might look different than it did before, but being able to architect a life that is consistent with your values and constantly moving towards them – that can be really helpful."

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Think of it as grief that travels in multiple directions at once, Talia says. "You're grieving your past self. You're grieving your current abilities, what you wanted to be able to do now and couldn't. And often, you're also grieving a future you thought you could have. And it's all happening at the same time."

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Getting through this grief is what ultimately opens the door to acceptance. From that place, a patient can start building the life they want with the chronic condition alongside them.

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"Something that may have been accessible and doable at one point may not be in a few years in the future," Alyssa explains. "So it's a constant process of figuring out: Who am I? What matters to me? How can I get closer to that in my day-to-day life? It's never over. It's a work in progress."

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Are digital health companies doing enough on mental health?

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Some yes, many no.

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"It is incredibly important to be thinking about the emotional and mental well-being aspect of living with a chronic health condition – even if your company is focused on treating those physical symptoms – because our mental health impacts our ability to follow through on treatment," Talia says.

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There's also a resource issue that many patients are left to solve on their own. "The way we treat mental illness is not the same as supporting the mental health of someone with a chronic health condition. It requires different ways of speaking, different goals, different priorities."

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Because not every therapist will have specialty training in condition-aware mental health support, technology can play an important role to personalize support.

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"Sometimes when we talk about the intersection of mental health and people who are living with chronic conditions, it gets talked about as if it's this monolith. And it really isn't," Alyssa explains.

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"If somebody needs to change their behaviors around taking a medication, diet, nutrition, or physical activity – those are all things that a behavioral health platform can help with. But not all behavioral health professionals can adeptly do that across a number of different populations. Technology offers a unique ability to have accessible, high-quality care that supports multiple aspects of the person and who they are, as opposed to approaching it as a monolith problem that has a one-size-fits-all solution.

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When mental health support is built into the product from the start – and when it's visibly aware of the chronic condition experience – it signals something to the patient right away: "This is a product that understands me."

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"There's a lot of medical trauma and mental health trauma within this community," Talia notes. "The more upfront you can show that you've thought about how this impacts their emotional health, the more quickly you can build that trust."

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What gets better when digital health companies do this right

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It all comes down to outcomes. Patients who feel fully supported are more likely to stay engaged with their treatment or support program. Sustained engagement leads to better outcomes. Better outcomes make it easier to demonstrate total cost of care reduction.

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"If the company drives revenue by proving that they're able to reduce spending on total cost of care or other medical costs, then the likelihood of that happening is much higher when the patients feel fully supported and their needs are being addressed in a comprehensive way," Alyssa says.

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Lived experience integration bolsters this same business logic. When it's embedded in product development, content, and messaging, companies can reduce customer acquisition costs, increase retention, and build language that earns trust from a population that is hard to reach and slow to extend it.

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"At the end of the day, that's what you need to do when you're working with people with chronic health conditions.," Talia says. "That lived experience aspect really helps business outcomes and customer outcomes. And that's what we want: both of those at the same time."