The Stories I Couldn’t Find — Guest Post by C. Helen

I love sharing guest posts on Despite Pain because they allow another voice to be heard and another story to be told.

This week, I’m delighted to welcome C. Helen, who recently published her novel, The Other Side of the Butterfly, which features a main character living with chronic illness. In this guest post, she shares how her own experiences, a search for authentic representation, and a love of reading helped inspire her journey into writing fiction.

The Stories I Couldn’t Find

How chronic illness, identity loss and reading led me towards writing fiction rooted in authentic representation. 

By C. Helen

The future I thought I was building

From the age of six, I became my late mother’s carer. She had a progressive neurological condition and later developed early-onset dementia. I grew up quickly, learning that even basic care needs often had to be fought for and defended.

Before my mother’s physical symptoms were recognised, some of her difficulties were dismissed as stress, depression or hysteria.  I missed many weeks of school because of my caring responsibilities and other complex circumstances, so I left without the qualifications I might otherwise have gained. 

We didn’t receive care from social services until I was eighteen. That only happened through the support and dedication of a wonderful social worker and occupational therapist, who helped us access the care my mother needed. Their involvement changed what was possible for both of us. 

The occupational therapist especially inspired me. She supported my mother to build confidence and regain small pieces of independence, including helping her feel able to ride her mobility scooter independently. My mother had limited function, but that support gave her a way to enjoy something in life again. 

I remained a large part of my mother’s care until her death, but seeing the difference the occupational therapist made stayed with me. I later caught up with my education and became a qualified occupational therapist. 

When chronic illness took away the future I had fought for

Lower back pain became part of my daily life, and like my late mother, I was quickly dismissed by the medical profession. I continued with my life and career, trying to find ways to manage the pain. Yet, over the years, both the pain and my other symptoms became worse. Eventually, my beloved career was cut short. 

I wholeheartedly tried to find other roles that my body might allow me to do, but each attempt failed. At the same time, numerous family members and friends didn’t understand what was happening to me, and some turned their backs on me. During that period of my life, I lost so much: my independence, my home, and my sense of Identity. 

One of the most difficult parts of chronic illness is grief. Pain Concern (2026) explains how chronic pain can involve the loss of friendships, employment and future plans, with the emotional Impact often being severe. This reflects my own experience. I grieved what my body could no longer do and mourned the person I thought I was supposed to become. 

Reading gave me an escape, but I was still searching to feel seen

Amid the decline of my condition, I picked up a novel at a charity stall. The cute grey cat on the front cover drew me in. That book was Alfie the Doorstep Cat by Rachel Wells, and after reading it, I was hooked. 

Fiction provided me with pure escapism. It allowed me to meet new characters, aided my understanding of lives different to my own, and step into worlds I could no longer reach due to the restrictions of my symptoms. Reading opened my world again at a time when my own had become much smaller. 

However, as my reading journey continued, I noticed how little chronic illness and disability appeared in fiction. When they did appear, they were often framed through cure, tragedy or Inspiration only. These characters were rarely given full, complicated lives with a range of wants, emotions, and relationships. There were snippets here and there, but I struggled to find stories where I truly felt seen. 

During this time, I attended a chronic pain management programme, where I was introduced to expressive writing. I had written in journals before but the majority of my writing experience was academic or connected to healthcare. 

Expressive writing gave me a different way to process what I was experiencing. It supported my emotional well-being and helped me begin to understand my changed Identity. Research supports this experience. Salikka, Kylma & Frojd’s (2026) systematic review shows that therapeutic writing can support chronic pain patients with emotional processing, empowerment and coping strategies. For me, this therapeutic tool became more than a means of managing emotion. It became the beginning of creative writing, and eventually, the path towards the stories I wanted to tell. 

Writing the story I had been searching for

It was important for me to find some way to still help people, and fiction became part of that answer. Stories may not change someone’s diagnosis or pain levels, but they can change how someone feels within their reality. They can offer recognition, empathy and a sense of feeling less Isolated. Research supports the importance of thoughtful representation. Hammer, S.T. and Stutts, L.A. (2025) found that complex disability representation reduced stigma, while stereotypical representation increased it. This matters because fiction does not only reflect the world around us. It can increase empathy for people and circumstances we may never otherwise encounter. 

My debut novel, The Other Side of the Butterfly, was inspired by true events from my own life and from the experiences of others who gave me their permission. I didn’t write a medical guide or a neat story of triumph, but an emotionally honest story about what happens when chronic illness changes your body, relationships and future. One of the central themes is medical gaslighting. I wanted to show the reality of being disbelieved by the very system meant to help you. I didn’t soften this or make it more comfortable for the reader, because medical gaslighting can be a huge part of the trauma itself. 

In many ways, becoming an author allowed me to keep caring for others. Not in a professional healthcare role, but through story, connection and representation. 

Summary

Chronic illness changed the future I thought I was building. It took away my career, independence and parts of my identity, but it also led me back to reading, then to expressive writing, and eventually to becoming an author. Through The Other Side of the Butterfly, I wanted to write the kind of story I had once searched for myself. A story where chronic illness, disability, mental health and medical gaslighting were not side notes, but part of the characters’ lives, relationships, choices and hopes.

I hope the novel reaches readers who are looking for honest representation and helps them feel recognised in some way. I also hope it speaks to anyone trying to build a different path from the one they imagined before chronic illness, pain or loss changed their life.

My own path looks different from the one I fought so hard to reach, but it still has meaning. As I continue writing, my future novels will carry the same focus on authentic chronic illness and disability representation, while telling new, heartfelt stories about identity, resilience, connection and hope.

If you would like to connect with me or purchase my novel, please visit my Linktree account

More About C. Helen

C. Helen is a contemporary fiction author whose heartfelt, engaging stories represent chronic illness, disability and mental health with honesty and depth. She writes from both professional experience and lived experience. Shaped by her background as a chronic illness patient, former young carer and Occupational Therapist. Her debut novel, The Other Side of the Butterfly, is an emotional story of sisterhood, medical gaslighting, invisible illness and survival after life changes beyond your control. Her short fiction has also been accepted into the inspiring Alive with Chronic Illness anthology, due to be published later this year.

References

Hammer, S.T. and Stutts, L.A. (2025) ‘The impact of disability representation on disability stigma in a general population’, Rehabilitation Psychology, 70(4), pp. 365–371. Available at: https://pubmed.ncbi.nlm.nih.gov/39760718/ (Accessed: 2 June 2026).

Pain Concern (2026) ‘Breaking Barriers #3: Emotional impact of chronic pain’. Available at: https://painconcern.org.uk/emotional-impact-of-chronic-pain/ (Accessed: 10 June 2026).

Salikka, T., Kylmä, J. and Fröjd, S. (2026) ‘Therapeutic writing interventions for adults with chronic pain: Experiences and health effects: A systematic review with a narrative synthesis’, European Journal of Pain, 30(2), e70235. Available at: https://doi.org/10.1002/ejp.70235 (Accessed: 10 June 2026).

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