By Nima – MSc Occupational Therapy Student (JB Occupational Therapy)

I’m Nima, an MSc Occupational Therapy student currently on placement with JB Occupational Therapy. Throughout this placement, I’ve been exploring the lived experiences of people managing chronic illnesses, with a particular focus on how invisible symptoms affect daily life, identity, and occupation.

This blog continues the conversations we’ve started through our podcast This Is My “Normal” and builds on themes from Shantel’s recent blog exploring chronic pain and Black women’s experiences within  the UK healthcare system.

When recording for the podcast, we spoke with Fatima, a mental health nurse living with Crohn’s Disease. One theme stood out more than anything: exhaustion. Not the kind of tiredness that a good night’s sleep could fix, but a relentless fatigue that pulls at every part of your life.

Her story was powerful and familiar not just to others living with Crohn’s, but to countless people managing long-term health conditions that come with chronic fatigue. Fatigue that isn’t visible, rarely understood, and often minimised, especially for Black women navigating the healthcare system.

As an MSc Occupational Therapy student, I wanted to take this conversation further beyond Fatima’s personal narrative to unpack what chronic fatigue really means, how it shows up in conditions like Crohn’s Disease, and why occupational therapy has such an important role to play in addressing this often-dismissed experience.

Understanding Chronic Fatigue: More Than Sleepiness

At its core, chronic fatigue is a disabling, long-term state of physical, emotional, and cognitive exhaustion. It isn’t laziness, lack of motivation, or poor time management. It’s a physiological and psychological phenomenon that leaves people with a body that feels heavy, a mind that feels fogged, and an emotional reserve that runs on empty.

The NHS (2024) defines chronic fatigue as persistent, severe exhaustion that lasts for months and significantly impacts daily life. Unlike temporary tiredness, chronic fatigue doesn’t resolve with rest and often worsens with exertion.

But definitions only scratch the surface. What often gets overlooked especially in mainstream healthcare conversations is the social, cultural, and emotional toll of fatigue, especially for people living in marginalised bodies.

For Black women in the UK, research consistently shows that fatigue is more likely to be dismissed, minimised, or misdiagnosed (NHS Race and Health Observatory, 2022). The expectation to “keep going,” to show strength, and to remain stoic in the face of suffering often leads to late diagnoses and delayed support (Hardeman et al., 2016).

Crohn’s Disease and the Hidden Weight of Fatigue

For those living with Crohn’s Disease, fatigue is one of the most reported and most poorly understood symptoms. While Crohn’s is primarily known for causing inflammation in the digestive tract, its systemic effects reach far beyond the gut.

According to Crohn’s & Colitis UK (2024), around 70% of people with Crohn’s experience significant fatigue during disease flare-ups, with 40% still reporting fatigue even during remission.

What makes this fatigue unique is its multi-layered cause:

• Ongoing inflammation
• Nutritional deficiencies like low iron or vitamin B12
• Sleep disturbances due to pain or bowel urgency
• Emotional stress and anxiety tied to symptom unpredictability
• Side effects from medication, including immunosuppressants

Listening to Fatima describe her day-to-day experience was a reminder that chronic illness fatigue doesn’t exist in isolation. It collides with work demands, family responsibilities, cultural expectations, and mental health pressures. The occupational impact is enormous.

Occupational Disruption: When Fatigue Steals Your Roles and Identity

As occupational therapists, we are taught to see beyond symptoms and diagnoses. Fatigue isn’t just a medical issue it’s an occupational issue.

When someone is too exhausted to get out of bed, go to work, cook a meal, or even engage in social or faith-based activities that give their life meaning, occupational injustice occurs.

Fatigue is a thief of roles, routines, and identities.

For Black women, these occupational losses often happen alongside a legacy of healthcare gaslighting and societal invisibility. Fatigue is not only misunderstood it’s racialised and gendered. Black women are statistically more likely to report that their symptoms aren’t taken seriously (NHS Race and Health Observatory, 2022). The emotional labour of constantly having to “prove” your suffering adds yet another layer of exhaustion.

Managing Fatigue: Reframing Recovery Through an Occupational Therapy Lens

There is no one-size-fits-all solution for chronic fatigue, but occupational therapy (OT) offers a compassionate and evidence-based approach focused on adaptation, pacing, and sustainable energy management.

At JB Occupational Therapy, I have seen firsthand how much value this approach brings to clients managing chronic illness. JB Occupational Therapy offers tailored one-to-one sessions specifically focused on pacing and energy conservation, which I have also found personally beneficial, especially during times of burnout.

Pacing is a therapeutic strategy that helps individuals balance activity and rest to prevent flare-ups of fatigue or pain. Rather than pushing through exhaustion, which often leads to post-exertional crashes, pacing encourages clients to recognise their physical and emotional energy limits, plan and modify tasks based on their current energy levels, and build rest and recovery breaks into their daily routines. Clients are also supported to use energy-saving strategies, such as setting timers, using ergonomic tools, or adjusting their schedules, and to reflect on their energy patterns over time to identify triggers and make informed adjustments.

At JB Occupational Therapy, these sessions are entirely person-centred. The therapists works collaboratively with clients to integrate pacing strategies within the context of their daily occupations, whether that involves work, education, caregiving, or self-care.

Through both observation and personal participation, I have experienced how powerful pacing can be in preventing burnout and maintaining engagement in meaningful activities, even when living with unpredictable and debilitating fatigue.

Occupational therapists often draw on models like the Person-Environment-Occupation (PEO) Model (Law et al., 1996) to explore how individual health, environmental demands, and social roles interact to shape each person’s experience of fatigue.

By reframing fatigue management through this lens, JB Occupational Therapy empowers clients to build sustainable routines that support their health and quality of life.

Moving Towards Validation and Support

Fatima’s story is not unique. Her experience reflects a much wider, often silenced reality for people especially Black women living with chronic illness and persistent fatigue. The invisibility of fatigue leads to dismissal, isolation, and occupational injustice.

Therefore, tackling the stigma surrounding chronic fatigue takes more than clinical intervention. It requires a shift in attitudes across healthcare, workplaces, education, and society at large.

Fatigue is more than just feeling tired. It’s time we believed people, adapted our systems, and made space for people with chronic illnesses to live meaningful, balanced lives. Let’s do better!

UK-Based Support Resources

• Crohn’s & Colitis UK – www.crohnsandcolitis.org.uk
• Action for ME (Myalgic Encephalomyelitis) – www.actionforme.org.uk
• Shout Mental Health Textline (UK-wide, 24/7) – Text SHOUT to 85258
• Disability Rights UK: Fatigue Support – www.disabilityrightsuk.org

References

Artom, M., Czuber-Dochan, W., Sturt, J., Norton, C., & Forbes, A. (2016). Understanding fatigue in inflammatory bowel disease. World Journal of Gastroenterology, 22(48), 10625–10635. https://doi.org/10.3748/wjg.v22.i48.10625

Bryant, K., Haynes, C., Greer, T., & Jones, K. (2022). Racism, bias, and health disparities: A call for action in occupational therapy. American Journal of Occupational Therapy, 76(2), 7602205010p1–7602205010p8. https://doi.org/10.5014/ajot.2022.049247

Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The Person-Environment-Occupation Model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63(1), 9–23. https://doi.org/10.1177/000841749606300103

National Institute for Health and Care Excellence (NICE). (2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. https://www.nice.org.uk/guidance/ng206

Powell, W., Richmond, J., Mohottige, D., Yen, I., Joslyn, A., & Basu, A. (2020). Medical mistrust, racism, and delays in preventive health care among Black men. Journal of General Internal Medicine, 35(6), 2139–2141. https://doi.org/10.1007/s11606-020-05674-1