Ingela Thuné-Boyle, PhD
Health Psychology 
Illness, Pain & Wellness Coach

Receiving a diagnosis can be a pivotal moment. For many, it brings long-awaited validation, a language for confusing symptoms, and a sense of being seen. It can reduce self-blame and open the door to appropriate treatment and support. In this sense, diagnosis can be profoundly helpful. However, there is a more complex side to this process that is less often discussed: the risk of fusing one’s identity with a diagnosis.

In this video, I explore why chronic illness is about far more than physical symptoms. While symptoms are often the focus of medical appointments, living with a long-term health condition can affect almost every aspect of a person's life. It can influence energy levels, daily routines, work, relationships, identity, confidence, and the ability to plan ahead, often in ways that remain invisible to others. I discuss how chronic illness changes the way people engage with the wor

One issue that is rarely discussed in depth within the literature on hypermobile Ehlers-Danlos syndrome (hEDS) is the question of diagnostic drift. Diagnostic drift refers to the gradual expansion or loosening of diagnostic boundaries in clinical practice, whereby a condition begins to include a broader and more heterogeneous group of patients than those originally defined by formal diagnostic criteria. In the context of hEDS, this is not a minor technical issue. It has impor

While neuroplastic processes may influence symptom expression, severity, and persistence in individuals with hEDS (as they may in any chronic condition), this does not change the underlying classification of hEDS itself. This is not simply a matter of academic disagreement or terminology. It reflects a fundamental distinction between a diagnosed connective tissue disorder and explanatory models of symptom persistence. Ideas about classification matter because they shape clini

I recently found myself reflecting on a chapter in Dr. Howard Schubiner's book Unlearn Your Pain, in which he places hypermobile Ehlers-Danlos syndrome (hEDS) within a neuroplastic category of conditions. This raised some important questions for me, both as a psychologist who works with chronic illness and chronic pain, and as someone with lived experience of hEDS. Before going any further, I want to acknowledge that I have great respect for Dr. Schubiner's contributions to t

Migraine is often misunderstood as simply a severe headache. In reality, it is a complex neurological condition involving the brain, nervous system, and broader physiological processes. For those who experience it, migraine can be profoundly disabling, affecting not only pain levels but also cognition, sensory processing, mood, and overall functioning.

Historically, many poorly understood illnesses were attributed to psychological causes when medicine lacked adequate biological explanations. Patients with complex or under recognized conditions were often dismissed as anxious, hysterical, or overly focused on their symptoms. This legacy has contributed to ongoing mistrust and even trauma among some patients and is now often described as medical gaslighting.

Autoimmune and immune-mediated inflammatory conditions such as rheumatoid arthritis, lupus, multiple sclerosis, inflammatory bowel disease (including Crohn’s disease and ulcerative colitis), and psoriasis are often understood primarily in terms of immune dysfunction. In many of these conditions, the immune system becomes dysregulated and mounts a persistent inflammatory response, sometimes targeting the body’s own tissues directly, and in other cases reacting excessively to i

Living with a chronic illness can quietly erode a person’s sense of self-worth. In a society that tends to prize productivity, independence, and physical vitality, those who live with long-term illness often feel left behind, not only in practical ways, but emotionally and existentially. When illness strips away the ability to work, socialize freely, or participate in daily life without immense effort or pain, it becomes easy to internalize a painful message: I am less worthy

Chronic illness presents a relentless challenge, not only to the body but to the human spirit. Living with a condition that does not resolve quickly, and may never fully disappear, demands more than just medical intervention; it requires resilience. Resilience - the capacity to adapt in the face of adversity - becomes a vital psychological resource for those navigating the long, unpredictable terrain of chronic illness.

Among the many symptoms that accompany chronic illness, fatigue is one of the most common, and one of the most misunderstood. Unlike typical tiredness that resolves with rest, chronic illness-related fatigue is persistent, pervasive, and often debilitating. It is not simply a matter of needing more sleep or trying harder to stay active; it is a profound exhaustion that affects the body, mind, and spirit.

Living with a chronic illness reshapes nearly every part of a person’s life, and friendships are no exception. While companionship and connection are fundamental human needs, they can become difficult to sustain or initiate when someone is navigating unpredictable symptoms, physical limitations, or the emotional weight of long-term illness. What many healthy people may take for granted - meeting for coffee, keeping up with texts, attending social events, or spontaneously maki

For many living with chronic illness, the word acceptance can feel loaded, even offensive. It may carry the sting of resignation, suggest defeat, or imply a passive tolerance of pain and limitation. To be told to "accept" one’s condition can sound dismissive, especially when that advice comes from those who do not grasp the daily realities of chronic illness. And yet, paradoxically, acceptance is also a cornerstone of psychological flexibility and emotional well-being.

Living with a chronic illness often involves not only physical pain or fatigue but also the ongoing challenge of explaining your condition to others. For many people with chronic conditions, one of the most exhausting and isolating aspects is the repeated need to clarify, justify, or defend their limitations to healthy people who simply do not understand.

Grief is usually associated with a single event such as the death of a loved one. However, in chronic illness, grief is also very prevalent despite the fact that no one has died. It can be an ongoing issue and is usually associated with many types of losses. Despite this, people don't often associate chronic illness with grief but the realization that life will never be what it was, and the future is not what you thought it would be, is a major loss.

Health Related Quality of Life (HRQoL) consists of at least four broad domains that can affect or be affected by one's condition and/or treatment: physical, psychological (including the behavioural), social and spiritual functioning.

While healthy individuals are currently experiencing a huge amount of uncertainty and even hardship as a result of the Corona virus, their lives will eventually get back to some kind of normal - maybe even a new normal - but with far less uncertainty. Most will eventually re-establish their routines and feel some sense of control over their lives. However, for those of us with a chronic illness, that sense of future uncertainty was always there and continues to cause havoc wh

When we live with a chronic illness, it's so easy to focus on our shortcomings. So easy to fall back on self-criticism and self-blame. You may feel guilty because you're no longer able to contribute to society in ways you would like to. You may feel embarrassed and ashamed over medical symptoms. You may feel inadequate as a spouse. You may not feel like a good enough parent to your children. You may feel like you let your friends down because you've had to cancel on them more

So, I've recently experienced quite a major bump in my ever present, complicated relationship with illness. My quality of life has been absolute crap despite my best efforts. I've had endless issues where nothing I did appeared to provide any relief whatsoever. This is not new to me. Indeed, I've been here before. Quite a few times actually yet each time, a quiet sense of despair sets in and my future seem very uncertain and bleak. Basically, I start to lose hope.