‘I felt invisible’: Growing up alongside a disabled sibling

In the UK, it is estimated that eight in ten disabled children have siblings – young people whose lives are deeply shaped by their siblings’ needs. These siblings “have a different experience of family life compared with other young people” and are often forced to accept that their disabled siblings’ needs are greater than theirs from a young age. The University of Portsmouth’s Siblings Matter Too report for the Family Fund programme documented the effect of disabilities on over 2,000 siblings, with one child acknowledging that younger children struggle to understand this difference in needs: “When you’re older, you understand it more … when you’re younger … you want it to be about you.”

If there were a problem child in our family, it would be my brother

Lily

Lily (names anonymised), a first-year undergraduate, discussed her personal experience growing up alongside her twin brother Alex, who has epilepsy, dyspraxia, and dyslexia: “If there were a problem child in our family, it would be my brother.”

Lily also has an older sister, Anna, who suffers from anxiety. Despite being a twin, Lily reports feeling closer to Anna – worn down by academic comparisons, the strain of Alex’s mood swings, and feeling neglected by their parents’ focus on his health.

She reported feeling ‘invisible’ growing up, with much of her parents’ time and conversations revolving around her brother Alex, which was ‘frustrating’

Burke’s study (2004) states that siblings face “experience of neglect … due to the competing and overwhelming needs of a disabled sibling.” Growing up, Lily resonated with Glass Child Syndrome, a “colloquial term” coming from “the idea that parents caring for children with special needs ‘look right through’ their healthy siblings.” She reported feeling “invisible” growing up, with much of her parents’ time and conversations revolving around her brother Alex, which was “frustrating.”

To protect Alex, Lily’s parents would diminish her achievements: “When I did well, they weren’t allowed to give me too much praise and attention, because then that would upset Alex.” When Lily was suffering as a result of his mood swings and attempted to confide in her parents, she felt like she was not “a top priority” and was dismissed.

This dynamic has clearly had a long-term impact on Lily’s psychological development: “I always felt selfish – my mum would tell me that I was being selfish to take away attention from my siblings when my siblings were struggling for things, especially with my brother.” Alicia Maples, a sibling of special needs children, said in a 2010 TEDx talk: “Glass children are conditioned not to have any problems. We are supposed to be perfect.” In order not to deflect attention away from the disabled child, their siblings are often asked (inadvertently or otherwise) to have lesser physical and emotional needs, laid out both in Maples’ talk and Lily’s responses.

The Family Fund report highlighted how siblings ‘often receive the brunt of some quite challenging behaviour from their disabled sibling’

Lily recalls receiving little help academically, needing to retain her parents’ energy and resources for her brother. With her mother putting “a lot of emphasis on education,” this was occasionally at the expense of her well-being. Facing a trip to hospital on the same day of an exam, Lily was told her “education came first”. Lily expressed that her mother would never say something like that to her brother.

Additionally, the Family Fund report highlighted how siblings “often receive the brunt of some quite challenging behaviour from their disabled sibling.” Alex’s medication from the ages of 11-14 years gave him mood swings that worsened the academic competitiveness between them: “He would get really upset when I scored higher than him or did better than him … It was very hard to manage that for a few years.”

Though not explicitly outlined in the report, highlighted assessment responses showed greater instances of male aggression against their female siblings than vice versa. Though Alex never became physically violent, Lily spent “a few years … walking on eggshells” and in fear of his aggression. “He was more aggressive … He shouted at me a lot.”

When approaching her parents about this behaviour, she was told to blame his medication, rather than him, which she understood. However, Lily continued to feel frustrated given the lack of support she received and wished someone had intervened sooner, saying: “Although it was the medication, that can’t always be an excuse.” The friction between Lily and her brother as a result of his mood swings was “worrying”, as she feared their relationship would remain strained forever.

A 2018 study showed multiple similar responses: “It was found in six studies that healthy siblings [describe] a loss or distancing. These were associated with changes in their unwell sibling, for example, becoming more prone to mood swings.” The same study found healthy siblings’ relationships with themselves have an “overwhelming sense of negativity” due to increased amounts of worry, anxiety, ‘survivor guilt,’ loneliness, and jealousy, “due to the reduced level of parental attention”. It concluded that siblings’ relationships with themselves are altered “as a result of meeting the changing needs of the family and consequently acquiring new roles, skills, and responsibilities that frequently became part of their long-term identity.” The Family Fund report also found that siblings play a significant role in the day-to-day care of their disabled siblings. Many assessments indicated “a helping or caring role for the sibling. The help provided by these siblings is far beyond that of most children.”

Lily adopted the role of ‘caregiver’ most often at school, told by her parents it was her job to “look out for him, look after him, [and] invite him into my social groups.” When these advances were rejected by Alex, who “didn’t like to think I was giving him any sort of ‘charity’”, it was Lily who was blamed: “My parents got frustrated because they didn’t think I was making a big enough effort … I wasn’t ‘trying hard enough.’”

Lily grew up in a constant state of worry for her brother’s health, always aware of potential triggers for his seizures and regularly putting his needs before her own

Maples’ talk addressed parents directly: “You cannot take for granted the emotional health of your children. Every emotion that you feel […] because of your special-needs child, your healthy child feels all of it too, but with the coping skills of a child.” Lily grew up in a constant state of worry for her brother’s health, always aware of potential triggers for his seizures and regularly putting his needs before her own.

Though Lily described herself as the “mum friend” in her secondary school friendship groups, and obviously cares deeply for her brother’s health, there is also a sense that this care-giving role was enforced by her parents as a duty or obligation: “I was trying to help and trying to look out for him, because that’s what my parents were [constantly] telling me I should be doing, to be a ‘nice sister’. I should be looking out for him, I should be looking after him.”

At university, Lily is away from him for the first time in her life, but the worry persists: “Although he … hasn’t had a seizure for one or two years … Everybody in my family is really worried about him being [at university] on his own.”

However, coming to university and being amongst people older than her, Lily is enjoying a lesser sense of responsibility over others, looking out for herself, and letting others “make mistakes they will make”. She “loves” no longer being the ‘mum friend’ of the group and “learning to grow back down [rather than being forced to] grow up.”

Lily continues to grapple with the often-conflicting responses to her brother’s disabilities

Like many young people, the move to university has been freeing for Lily. Her relationship with Alex has improved, with their different courses “establishing the difference between us” and meaning “people don’t compare us as much now.” It has, however, “been really hard to be apart” and, at times, has felt “weird being my own person.”

“It’s definitely freeing … I’m like my own individual … But it has been weird. In a way, I’ve lost something that was always there, so it’s been strange.”

Lily continues to grapple with the often-conflicting responses to her brother’s disabilities. While her natural care for her brother was genuine, it was often overshadowed by the sense of duty her parents had imposed on her during her childhood. Consistently compared academically at school, Lily learned quickly to downplay her achievements to protect his feelings. She grew up knowing she may not get the help she needed, neglected in favour of her siblings’ more immediate needs. Reports like the Family Fund’s reveal a common pattern: many siblings of disabled children face unequal treatment, with their education, rest, and well-being frequently compromised. As Burke writes, “the needs of siblings are clearly not a new phenomenon; siblings should be listened to by professionals,” a call to recognise and support these silent carers, whose stories deserve to be both told and heard.