Kelly Kearley Interview on the Psychological Impact of Rare Disease and Caregiving
- 3 days ago
- 5 min read
Kelly is a Psychotherapist, author, and rare disease advocate whose work bridges professional expertise with lived experience of caring for a child with a rare condition. In this interview, she explores the psychological impact of rare disease, caregiving, and complex needs, and why mental health support must better reflect the realities families are living with. She also reflects on empathy in clinical practice, systemic gaps in healthcare, and the importance of integrating lived experience into therapeutic work.
Kelly Kearley, Psychotherapist and Rare Disease Advocate
How did your experience as a caregiver for your son with a rare disease shape your approach to mental health support for others in similar situations?
My experience as a caregiver for my son is the reason I entered the mental health profession. He was diagnosed with a rare disease when he was two and a half, and I found myself suddenly navigating a world of uncertainty, medical appointments, advocacy, and constant decision-making about the future.
The psychological impact was profound. I experienced a period of depression that lasted several years as I came to terms with our reality and the emotional weight of what we were living through. Looking back, I recognise how little psychological support existed for parents in this position, and how invisible that burden often was.
As I recovered, I retrained as a Psychotherapist. My lived experience remains central to my work. It has taught me that what can appear as “struggling” is often a human response to prolonged uncertainty, pressure, and emotional demand. My role is to create a space where those experiences can be understood, validated, and explored without judgement.
How does empathy play a role in your psychotherapy practice, particularly when working with families facing rare diseases or caregiving challenges?
Empathy is central to my practice, but working with rare disease and caregiving families has deepened my understanding of what empathy actually means. It is not just about understanding how someone feels, but recognising the context in which those feelings exist.
Many of the people I work with are living with ongoing uncertainty, exhaustion, and responsibility, often within systems that feel difficult to navigate. In this context, empathy means listening without rushing to fix or reframe, and recognising that anxiety, grief, and burnout are understandable responses to lived experience.
My own experience as a parent carer has also shaped this. It has given me insight into the relentless nature of advocacy, decision-making, and emotional load. Ultimately, empathy in my work means creating a space where people do not need to justify their reactions, but can be fully understood within the reality of their lives.
As someone who's deeply involved in rare disease advocacy, what do you believe is the most overlooked aspect of mental health support for caregivers and families dealing with rare conditions?
One of the most overlooked aspects is ongoing systemic uncertainty. Much support is designed around the idea that distress has a clear cause and resolution. In rare disease and caregiving contexts, uncertainty is often continuous.
This creates a psychological burden that includes not only emotional distress, but also constant planning, anticipating, and adapting. It can result in chronic stress that is difficult to recognise within short-term models of care.
Another overlooked factor is the emotional impact of repeatedly having to justify need within healthcare and education systems, which can lead to invalidation and emotional fatigue.
These are not isolated psychological issues, but ongoing systemic experiences. Support therefore needs to prioritise validation, sustainability, and helping families live alongside realities that do not resolve.
In your opinion, how can healthcare professionals better integrate mental health support into the care of patients with rare diseases?
Psychological wellbeing is not separate from physical health; it is part of the lived experience of rare disease. A key step is early, routine acknowledgement of psychological impact at diagnosis and throughout care. This does not always require referral, but it does require emotional awareness, validation, and space for conversation.
Continuity of care is also essential. Many families repeatedly retell their story, which is emotionally draining. Named contacts and clearer systems can reduce this burden and support wellbeing.
There also needs to be greater awareness of healthcare-related trauma. Being listened to and believed can itself be therapeutic. Integration is not about adding layers, but embedding psychological awareness into everyday clinical care.
What changes are necessary in the healthcare system to better address the psychological needs of rare disease patients and their families?
The system needs to move away from fragmented, short-term models towards continuous, relational care that reflects long-term conditions.
Named key workers or coordinators would reduce repetition and provide stability. There also needs to be greater recognition of healthcare-related trauma and the cumulative emotional impact of ongoing advocacy, appointments, and uncertainty.
Training is essential so professionals understand chronic grief, caregiver burnout, and emotional labour. Most importantly, psychological support should be embedded from diagnosis and available flexibly over time. Support must reflect the reality that these are lifelong conditions, not time-limited episodes.
How can building supportive communities within the rare disease advocacy space help families feel seen and heard?
Supportive communities reduce invisibility. For many families, the relief comes from not needing to explain their reality. These spaces validate lived experience in a way that is often immediate and instinctive. This reduces isolation, shame, and emotional burden.
They also provide practical and emotional support, from shared knowledge to coping strategies and advocacy guidance.
Importantly, they help restore identity beyond the condition itself, reminding families they are part of a wider network of understanding and shared experience.
What are some of the first steps in normalising mental health conversations in the rare disease community?
The first step is permission, creating space to speak openly about emotional experience alongside physical health.
Normalisation begins when mental health is recognised as part of lived experience, not separate from it. Anxiety, grief, and burnout should be understood as expected responses, not personal failure.
Language is key. When leaders and families name these experiences, stigma reduces.
It is also important to create spaces where honesty is safe, and where hope and emotional reality can coexist without judgement.
How has your work as co-author of ‘Positively Rare’ influenced how the emotional realities of rare diseases are perceived by the public?
‘Positively Rare’ created space for lived experience to sit alongside reflection, offering a more honest picture of rare disease life. It helped challenge simplified narratives that focus only on resilience or inspiration, and instead included uncertainty, grief, identity change, and emotional fatigue. It also highlighted the importance of shared storytelling. When people recognise their experience in others, isolation reduces. For wider audiences, it builds empathy and understanding of what is often unseen.
I am now working on a second book with my PTEN community, bringing together 25 patients and families to share their stories, with the aim of launching this book for Rare Disease Day 2027. This continues the same intention: to amplify lived experience as a collective voice.
Ultimately, storytelling is a form of advocacy that makes emotional reality visible.
What is your personal philosophy when it comes to combining clinical expertise with lived experience in supporting families affected by rare diseases?
Clinical expertise and lived experience are not in competition; they are complementary when held with balance. Clinical training provides structure, ethics, and evidence-based understanding, whilst lived experience provides depth, context, and emotional insight.
Neither is sufficient alone. Clinical knowledge without lived experience risks becoming detached; lived experience without clinical grounding risks lacking containment.
In my work, lived experience deepens my understanding of chronic grief, advocacy fatigue, identity change, and uncertainty. Clinical training ensures this is held safely and ethically.
Ultimately, I believe the most meaningful support happens when people feel both professionally held and personally understood. My aim is always to create a space where families feel that their experiences are not only clinically recognised, but humanly understood as well.
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