‘I have one sister, Kerry… she passed away’

In secondary school, during a technology lesson, a popular girl was asking around the room whether anyone had any siblings. I anxiously waited for her to ask me, not sure how to respond in front of all my classmates. Finally, she turned to me. 'Do you have any siblings?' I opted for 'That's a difficult question to answer'. Cue confusion from her – 'How can it be difficult?' – and a barrage of laughter from the rest of the class. She, of course, didn't know; neither did most of my classmates.

I lost my sister at a young age: I was 10 years old, and she was just 9. She was born with a neurodegenerative disease commonly known as Batten Disease, with varying types. It is an incredibly rare disease, with as little as 100-150 children and adults living with a diagnosis in the UK. It was naively explained to me as a 'hole in her brain' by my parents, and I always knew she would likely not make it to adulthood. 

Now, as an adult, I look back on how I was able to cope with everything that comes with not only the loss itself, but also the knowledge of the inevitable, the hospital visits, the scares. I decided to look into the research on the topic. 

Stigma, neglect and the 'normal'

Siblings are an often-forgotten population in research on the effects of childhood death and illness, as much of the literature focuses on the impact on parents. Even less attention is given to specific experiences of siblings that are affected by rarer terminal illness, with most current studies focusing on cancer (Rajendran et al., 2024). Nevertheless, illness and loss have a clear and significant impact on siblings. Sisters have been found to be more significantly affected by sibling death than brothers are, particularly if the cause of death is a sudden or long-term illness, having an impact on both education and relationships (Fletcher et al., 2013). A consistent theme has also been the stigmatisation of having a sibling with an illness, and by extension the potential negative reaction from others (Deavin et al., 2018; Rajendran et al., 2024).  

To my surprise, much of the literature discusses the feeling of 'neglect' from the healthy sibling, where inevitably the attention and focus is on the unwell sibling prior to loss, with a strong feeling of 'change' within the family (Deavin et al., 2018). Provision for therapeutic support for siblings of a child with a life-threatening illness has been suggested to ease the familial stress (Burton, 2010). I always felt attended to by my parents, who involved me in organisations such as Claire House Children's Hospice so that I could be amongst other children who were also experiencing the same things I was, with peer support being identified as a key support mechanism within the literature (Rajendran et al., 2024). 

However, research has also indicated the need for a 'normal' environment and to be allowed to cope in a manner that worked best for the individual, even if that meant periods where there was no presence of grief and mourning (Nolbris & Hellstrom, 2005). That is something I can relate strongly to. These coping strategies potentially vary by the age at which the loss has occurred – further research is needed to explore this (Charles & Charles, 2006). 

Keeping the memory alive

So how do I face the sibling question? Perhaps the stigma explains why I'm conflicted if asked 'Do you have any siblings?'. I'm never sure whether to say yes, which leads to uncomfortable questions of 'What does she do?', 'How old is she?', that I then must follow with 'She passed away'. This tends to lead to an immediate face drop and a panicked apology, and I then feel somewhat responsible for making them feel that way. If I say no to the sibling question, I feel guilty for not acknowledging her existence, and this is usually followed by confusion when I absentmindedly mention her later. 

In secondary school, I told my best friend I had a sister, but opted not to tell her that she had passed away, which ultimately led to her embarrassment when she found out. My current partner learnt of my sister's death by accident, and felt unsure whether to broach the subject, opting to wait for me to approach him with it, but now would feel comfortable openly asking questions. Her illness and death drove me towards an interest in the brain and how it works, which ultimately led to my career – so perhaps she has influenced both my education and relationships, even if not directly so. 

More recently, I've opted for a more open approach of 'I have one sister, but she unfortunately passed away'. When this is met with condolences, I now also follow up with 'but I like talking about her, and I'm happy to answer any questions, so please don't feel like it's a sensitive subject that needs to be avoided'. This is true, I want a chance to be able to talk about my sister without the pitying look. I want people to feel comfortable to ask questions, as I know that when someone passes at a young age there is always a curiosity. This won't not be the same for everyone who has lost a sibling. For some, it may have been a traumatic experience, one that they do not wish to discuss, and it is important to be mindful of individual experiences. 

As for me, though, I want to talk about her. I want to keep her memory alive and hope to also raise awareness of the disease and to strive for research to help support those in similar situations. For my little sister, Kerry. 

• Dr Rebecca Randles is a Lecturer in Psychology at Arden University. [email protected]

References

BDFA. (n.d.). About Batten Disease. Batten Disease Family Association UK.

Burton, M. (2010). Supporting adolescents who have a sibling with a life-threatening illness: An exploratory study. Counselling and Psychotherapy Research, 316-321. 

Charles, D. R., & Charles, M. (2006). Sibling loss and attachment style: An exploratory study. Psychoanalytic Psychology, 23(1), 72–90.

Deavin, A., Greasley, P. & Dixon, C. (2018). Children's Perspectives on Living With a Sibling With a Chronic Illness. Pediatrics, 142(2). 

Fletcher, J., Mailick, M., Song, J. & Wolfe, B. (2013). A Sibling Death in the Family: Common and Consequential. Demography, 50, 803-826.

Nolbris, M. & Hellstrom, A.L. (2005). Siblings' Needs and Issues When a Brother or Sister Dies of Cancer. Journal of Pediatric Hematology/Oncology Nursing, 22(4). 

Rajendran, P., Jarasiunaite-Fedosejeva, G., Isbir, G.G. & Shorey, S. (2024). Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis. Palliative Medicine, 38(1), 25-41.