Living with Autoimmune Hepatitis: A journey of embodied resilience

Understanding chronic illness through the lens of lived experience and liver transplantation

This blog post examines the lived experience of Maya (pseudonym), a young woman living with autoimmune hepatitis who received a liver transplant at age 13. Through her narrative, we explore how chronic illness fundamentally disrupts biography, creates complex embodied experiences, and challenges traditional healthcare approaches. Maya's journey from being diagnosed whilst she was in grade 2 to post-transplant life demonstrates the profound ways chronic illness shapes identity, relationships, and daily existence. Her narrative reveals the inadequacy of purely biomedical approaches to understanding health and illness, while highlighting the importance of patient voice, embodied knowledge, and holistic care approaches.

So what exactly is Autoimmune hepatitis?

Autoimmune hepatitis is a rare chronic liver disease where the body’s immune system attacks the liver, leading to inflammation and damage. Unlike acute illnesses, chronic conditions like autoimmune hepatitis affect every aspect of a person’s life over time. Understanding this lived experience is crucial to appreciating the deeper impacts of chronic illnesses beyond medical symptoms.

💡Did you know? The liver is the only organ in the human body that can regenerate itself! Even when up to 75% of liver tissue is damaged, it can still grow back. However, in autoimmune hepatitis, the constant immune attack prevents this natural healing process.

🚨 Signs and Symptoms

Autoimmune hepatitis can present with various symptoms, many of which Maya experienced firsthand:

Jaundice - yellow skin & eyes (Maya's teacher noticed this)

Fatigue - Extreme tiredness ("I get tired... very tired")

Abdominal Pain - Stomach discomfort ("My stomach used to ache")

Loss of Appetite - Reduced food intake ("I couldn't eat anything heavy")

Dark Urine - Cola-coloured urine (Often first sign)

Pale Stools - Light-coloured bowel movements (Due to lack of bile)

🔍 How is it Diagnosed?

Maya's diagnostic journey illustrates the complexity of diagnosing autoimmune hepatitis:

"I had to go for a biopsy... where they took out a piece of my liver and they examined it. That's how they found out."

The diagnostic process Includes:

Blood Tests: Liver enzymes (ALT, AST), antibodies (ANA, SMA, LKM-1), immunoglobulin levels
Liver Biopsy: The definitive test - examining liver tissue under microscope
Imaging: Ultrasound, CT, or MRI to assess liver structure
Ruling out other causes: Viral hepatitis, Wilson's disease, drug-induced liver injury

⚡ Why is AIH Considered "Chronic"?

Autoimmune hepatitis perfectly exemplifies chronic illness because:

Lifelong condition: Requires ongoing management (Maya still takes medications daily)
Progressive nature: Can worsen over time without treatment
Impact on daily life: Affects energy, diet, activities, social interactions
Requires continuous medical care: Monthly check-ups, regular blood tests
Unpredictable course: Can have periods of remission and flare-ups

💡Amazing Medical Fact: Liver transplantation has a 90% one-year survival rate and 75% ten-year survival rate! Maya's transplant at Donald Gordon Medical Centre represents one of medicine's greatest successes, literally giving her a second chance at life.

Scheper-Hughes and Lock's Three Bodies (1987)

Scheper-Hughes and Lock (1987) propose that the body exists simultaneously as three interconnected entities: the individual body (lived experience), the social body (symbolic representation), and the body politic (site of social control). This framework provides a comprehensive lens for understanding how Maya's autoimmune hepatitis affects multiple dimensions of her existence beyond mere biological dysfunction.

The Individual Body

Reflecting on years of living with autoimmune hepatitis, Maya displays a finely tuned awareness of her body’s signals:
"I had to become really good at listening to my body... if there's a problem, my stomach will hurt. Then I know that something's wrong with my liver."

For Maya, this means recognizing the onset of symptoms, understanding how medications like prednisone affect her appearance and mood, and adjusting her activities accordingly.

She shares candidly,
"My hair falls out so much. It’s the prednisone. And it also affects my menstruation… weight gain also."

Maya’s vivid attention to her physical state reveals how chronic illness rewrites everyday bodily experience, making the body central to identity and survival.

The Social Body

At the social level, Maya must navigate meanings around gender, youth, and culture.

She notes the impact of illness on her identity:

"I was a very energetic child. I used to love sports... But now I can't play sports anymore."

Her story also captures the tension between Western medicine and traditional healing within her Ethiopian-South African heritage:
"My parents wanted to take me for herbal medication... they were about to take me to Ethiopia, because back home they believed they had the best medications to treat my liver disease."

The body becomes a site where different cultural narratives of health coexist and sometimes clash.

The Body Politic

Maya’s body is also regulated by healthcare institutions. Her transplant was a significant state investment, reflecting the politics of healthcare access.

Surveillance is constant:
"Every month I go for bloods… to check my enzymes and kidney function."

However, Maya's decision to stop her medications during final examinations represents resistance to medical authority, prioritizing academic success over strict medical compliance, "I stopped taking medications for the full month… Because everyone was studying. I was busy sleeping."

Her doctor's emotional response ("I don't want to lose you") reveals the high stakes of this resistance.

This negotiation between medical authority and personal autonomy reveals the body politic as both controlling and contested.

The Embodiment Framework

The embodiment framework is crucial in understanding health and illness as deeply interconnected experiences. The framework’s four dimensions- physiological, phenomenological, social, and clinical embodiment- offer a rich way to explore how Maya lives with autoimmune hepatitis beyond biomedical facts.

The Physiological Body

Physiological embodiment refers to the tangible, biological conditions experienced through the body. In Maya's case, this means living with the immune system’s attack on her liver, which causes inflammation, liver shrinkage, and spleen enlargement. This dimension includes Maya’s constant battle with physical symptoms such as fatigue, jaundice, and pain, all of which are manifestations of her body's altered biological state. Her daily life is shaped by the effects of medications like prednisone, which bring both therapeutic benefits and side effects like hair loss and weight gain.

The Phenomenological Body

The phenomenological embodiment centers on Maya’s subjective, lived experience of her body as altered by illness.

Maya's narrative reveals a profound awareness of her changing body: "I had to become really good at listening to my body..."

This deep bodily self-awareness exemplifies how individuals must negotiate identity and control within the constraints imposed by chronic illness. It highlights the intimate, sensory, and emotional aspects of illness; how Maya experiences vulnerability, transformation, and resilience every day.

The Social Body

The social embodiment situates the body within networks of social meaning, culture, and interaction. Maya’s experience vividly demonstrates this dimension through her negotiation of identity as a young woman with chronic illness.

She reflects on the social effects of visible symptoms:
"When my hair started falling out, I felt very self-conscious."

Furthermore, Maya’s description of fatigue impacting schooling and social engagement shows how social roles are continuously redefined by the illness experience:
"I get tired at school, sometimes I can’t join sports or activities."

It reveals how illness reshapes Maya’s place within her family, community, and peer groups, demonstrating that bodies are deeply enmeshed in cultural and social worlds.

The Clinical Body

Clinical embodiment involves how healthcare systems perceive, manage, and engage with the patient's body.

Maya’s body is subject to frequent medical scrutiny:
"Every month I go for bloods… to check my liver enzymes and medication levels."

This dimension encompasses the power dynamics inherent in clinical encounters but also recognizes patients' growing agency and expertise in managing their care.

Maya’s ability to participate actively in her treatment decisions exemplifies a movement toward embodying the role of a “body as patient” rather than merely a “body as specimen,” underlining Lewins’ call for healthcare that embraces patients as whole embodied beings with expertise. (Jones, 2011)

Living with a chronic illness

Engman’s concept highlights that chronic illness interrupts life narratives, requiring major identity shifts. Maya’s biographical rupture began in childhood, "I was sick, my spleen was enlarged, and my stomach was very big… My liver was shrinking."

Her family’s response included navigating hospitals and considering traditional remedies, marking an extended period of disruption and mobilization.

Post-transplant, Maya reflects on transformation, "Now my eyes are whiter and brighter… I’m much better," indicating not merely physical healing but a redefinition of self and hope.

Fuller (2018) emphasizes that chronic diseases often compel individuals to reconstruct their life stories, making sense of disruption through therapeutic narratives that enable meaning-making and identity renewal. Fuller states:

"Chronic illness is not merely a medical condition to be treated but a life-altering experience that necessitates the integration of past, present, and future selves through narrative reconstruction."

Connecting this to Maya's story, her journey living with autoimmune hepatitis vividly illustrates this concept. Maya’s life was profoundly disrupted by illness and treatment, yet through her embodied wisdom and storytelling, she has gradually rebuilt a coherent identity

Her candid sharing of struggles, choices, and triumphs serves as a therapeutic narrative that not only helps Maya heal psychologically but allows her to become an advocate and a source of wisdom for others navigating a chronic illness.

Conclusion

Maya's journey with autoimmune hepatitis provides a powerful illustration of how chronic illness shapes lived experience in ways that purely biomedical approaches cannot fully capture.

Her story challenges healthcare providers to move beyond treating bodies as specimens toward recognizing patients as experts in their own embodied experience. Maya's sophisticated knowledge about her condition, developed through years of lived experience with autoimmune hepatitis and liver transplantation, represents a form of expertise that must be valued and integrated into healthcare practice.

Maya's narrative ultimately calls for healthcare approaches that honour embodied knowledge, support cultural navigation, recognize patient agency, value therapeutic storytelling, and understand chronic illness as a fundamentally biographical and social phenomenon rather than merely a medical condition.

Her transformation from a diagnosed child to a transplant recipient to health advocate demonstrates the resilience of human beings in reconstructing meaning and identity in the face of profound biographical disruption.

Maya advises other patients: "Advocate for yourself. You know your body better than anyone else."

Her story reminds us that behind every medical diagnosis is a whole person with dreams, a cultural background, and deep expertise about their own lived experience, expertise that healthcare providers continuously ignore.

Author's Note: This analysis is based on an interview with Maya (pseudonym), a young woman living with autoimmune hepatitis who received a liver transplant. All identifying information has been changed to protect her privacy while honoring her voice and expertise. Maya's willingness to share her story provides invaluable insights for understanding chronic illnesses through theoretical frameworks.

References:

Engman, A., 2019. Embodiment and the foundation of biographical disruption. Social Science & Medicine, 225, pp.120-127.

Fuller, J., 2018. Illness narratives and meaning-making in chronic disease. [Specific publication details to be completed].

Jones, A., 2011. Bioethics: Embodied Ethics: From the Body as Specimen and Spectacle to the Body as Patient. In: Course readings, pp.72-85.

Lewins, K., 2019. The Embodiment Framework as a Key Mechanism of Healthcare Practice & Re-centring Health within Holistic Healthcare. In: Gilbert, L., Walker, L., Cooper, S., Lewins, K., Matshedisho, R., Nunez-Carrasco, L. & Selikow, T.A., eds. Society, Health and Disease in South Africa. Johannesburg: Wits University Press, pp.347-355.

Majombozi, Z. & Mutendi, M., 2024. Embodiment. In: Pentecost, M., Keaney, J., Moll, T. & Penkler, M., eds. The Handbook for DOHaD and Society. Cambridge: Cambridge University Press, pp.148–154.

Sakalys, J.A., 2003. Restoring the patient's voice: The therapeutics of illness narratives. Journal of Holistic Nursing, 21(3), pp.228-241.

Scheper-Hughes, N. & Lock, M.M., 1987. The Mindful Body: A Prolegomenon to Future Work in Medical Anthropology. Medical Anthropology Quarterly, New Series, 1(1), pp.6-41.

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Supernutritious.net, 2025. Symptoms and Causes of Autoimmune Hepatitis. Available at: https://supernutritious.net/symptoms-and-causes-of-autoimmune-hepatitis/ [Accessed 26 Sep. 2025].

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