What is the True Impact of Rare Disease and SEN on Therapy and Why Therapy Must Adapt
- Jun 10
- 6 min read
Kelly is a Psychotherapist, Charity Manager at PTENUKI, and co-author of Positively Rare. She shapes the conversation on the psychological impact of rare diseases, autism, SEN, and caregiving, bridging lived experience with clinical expertise to raise awareness and inspire change.
The conversation around mental health has advanced significantly in recent years. More people are accessing counselling, psychotherapy, and psychological support than ever before. Yet for many individuals living with a rare disease, caring for a loved one with complex needs, or parenting a child with SEN, there remains an important question, what happens when therapy itself does not fully understand the reality of the life being lived?
This article is the eighth in a series exploring the psychological impact of rare disease, caregiving, and complex needs. It examines why traditional models of therapy do not always fit the experiences of rare disease families and why a more adapted, informed approach is often needed.
The destination may be the same, but the journey is different
Many of the goals of therapy are universal. Whether someone is living with a rare disease, caring for a loved one, parenting a child with complex needs, or navigating more familiar life challenges, people often seek therapy to better understand themselves, manage difficult emotions, improve relationships, and find ways to cope with adversity. The difference is not necessarily in the destination. It is in the terrain.
Rare disease and SEN families do not necessarily need different therapeutic goals, they need therapy that understands the context in which those goals exist. Therapy cannot be truly effective if it ignores the realities of chronic uncertainty, ongoing caregiving responsibilities, healthcare trauma, systemic barriers, or the persistent emotional labour that many families carry every day.
When therapy understands the landscape, it becomes far more than a set of techniques. It becomes a space where people feel genuinely seen, understood, and supported in the reality of the life they are actually living.
When traditional therapy falls short
Therapy can be transformative, but it is not immune from misunderstanding. Many therapeutic models were developed around difficulties that have a clear beginning, middle, and end. They often assume that distress stems primarily from thoughts, emotions, or experiences that can be processed and resolved.
For rare disease families and those navigating SEN, however, many stressors are ongoing. The uncertainty is real. The appointments are real. The financial pressures are real. The caregiving demands are real. Therapy must recognise that these are not irrational fears or distorted beliefs, they are lived realities.
When therapists fail to understand this context, clients can leave sessions feeling unseen, misunderstood, or even blamed for struggling with circumstances that would challenge anyone.
The difference between pathology and reality
One of the greatest risks in therapy is treating understandable responses as symptoms to be eliminated. Parents may present with anxiety because they are constantly managing medical uncertainty. Carers may experience exhaustion because they rarely have an opportunity to rest. Patients may feel grief because they are living with ongoing loss and unpredictability.
These reactions are often not signs that something is wrong with the individual. They are human responses to difficult circumstances and effective therapy begins by recognising this distinction.
When therapy doesn't fit the reality
I experienced this personally when I sought support through my GP and was referred to a local NHS service called Time to Talk. The service typically offered between six and twelve sessions of therapy and, following a lengthy assessment, I was later informed by letter that they did not feel the service was suitable for my circumstances. The explanation given was that my difficulties were expected to be lifelong rather than short term in nature. Alongside this, I was provided with a list of crisis helplines should I find myself in immediate distress.
What struck me most was the underlying message. Because my circumstances were unlikely to change, the support on offer could not meet my needs. Yet this is precisely the reality faced by many rare disease families, carers, and parents of children with complex needs. The uncertainty, advocacy, caregiving responsibilities, and emotional labour do not simply disappear after a few months.
This is not a criticism of short term therapeutic services, which provide valuable support to many people. Rather, it raises an important question about how psychological services can better meet the needs of those living with ongoing and complex circumstances. Rather than asking whether these challenges can be resolved, therapy should be asking how people can be supported to live alongside them without becoming overwhelmed.
Long term challenges do not make psychological support less relevant. If anything, they make it even more essential.
Living with uncertainty
As explored throughout this series, uncertainty is a defining feature of many rare diseases and complex needs journeys. Questions about future health, educational provision, independence, employment, or disease progression may never have clear answers.
Much of psychological therapy focuses on helping people tolerate uncertainty. For rare disease families, however, uncertainty is not a temporary phase to move through. It is often a permanent feature of life.
Rather than helping clients eliminate uncertainty, therapy may need to focus on developing ways to live alongside it. This involves building flexibility, self compassion, and emotional resilience while acknowledging that uncertainty itself is often unavoidable.
Understanding chronic grief
Many rare disease families live with chronic grief. Unlike bereavement, this is not grief that resolves after a period of mourning. It is grief that resurfaces repeatedly as circumstances change and new challenges emerge.
Therapy must make room for this ongoing experience rather than assuming that acceptance means the grief disappears. Healing is not about moving on from loss. It is about learning how to carry it differently.
Recognising the impact of systems
Many psychological difficulties experienced by families are not created solely within the individual. They are influenced by healthcare systems, education systems, social care systems, and wider societal attitudes.
A parent fighting for an education, health and care plan may not need therapy to change their thinking. They may need therapy that helps them cope with the emotional toll of repeatedly having to prove their child's needs. Similarly, a patient navigating years of medical appointments may need support processing healthcare trauma, frustration, and exhaustion rather than being encouraged simply to think more positively. Therapy that ignores these realities risks individualising problems that are often systemic.
The importance of feeling understood
Therapists do not need personal experience of every condition they work with, but they do need curiosity, humility, and a willingness to learn.
Clients should not feel responsible for educating their therapist about the emotional realities of rare disease, caregiving, or SEN. A strong therapeutic relationship is built on listening, validation, and a genuine appreciation of the wider context shaping a person's life.
Feeling understood is often one of the most powerful aspects of therapy. For people who spend much of their lives explaining themselves to healthcare professionals, educators, employers, and wider society, having a space where explanation is no longer required can be profoundly healing.
What adapted therapy looks like
Therapy that supports rare disease and SEN families is often characterised by flexibility, realism, and compassion. It recognises that resilience does not mean coping perfectly, that grief and hope can coexist, and that emotional distress is not always something to be fixed.
Instead, therapy becomes a space where people can process difficult experiences, make sense of complex emotions, strengthen coping strategies, and reconnect with parts of themselves that may have been lost beneath years of caregiving, advocacy, or uncertainty. Most importantly, it becomes a place where people no longer need to justify why life feels hard.
Closing reflection
The psychological impact of rare disease and SEN extends far beyond diagnosis, symptoms, or caregiving responsibilities. It affects identity, relationships, hopes for the future, and the way people experience the world around them.
As this series has explored, these experiences are often invisible to others. Therapy has the potential to provide a space where they are seen, understood, and validated. But to do so effectively, therapy must adapt to the realities people are living, rather than expecting people to adapt to therapy.
In an ideal world, psychological support would not be viewed as a short term intervention offered only when someone reaches crisis point. Instead, it would form part of the journey from the moment of diagnosis or recognition of need. Families would have access to a trusted therapeutic relationship that could be revisited throughout different stages of life, a source of support to return to during periods of uncertainty, transition, loss, or overwhelm. Sometimes that support might be needed regularly. At other times, only occasionally. What matters is knowing it is there.
When psychological support recognises the complexity of rare disease and SEN, it becomes more than treatment. It becomes understanding, connection, and a reminder that no one should have to navigate these challenges alone. Ultimately, psychological support should be designed as a companion to the journey, not simply a response to the crisis.
Read more from Kelly Kearley
Kelly Kearley, Psychotherapist and Rare Disease Advocate
Kelly is a psychotherapist, author, and charity leader shaping the global conversation on the psychological impact of living with a rare disease, autism, SEN, and caregiving. Co-author of Positively Rare and Charity Manager of PTENUKI, she bridges lived experience with clinical expertise to bring overlooked mental health challenges to light. Her work explores resilience, advocacy, and the hidden toll of caregiving in extraordinary circumstances. Kelly's mission reaches beyond the rare disease community, she seeks to help the wider world understand the profound emotional impact these journeys carry. By fostering awareness and empathy, she inspires change across healthcare, education, and society.
