Misha Heaton was excited for the birth of her brother. At four-years-old, she couldn’t wait for a playmate, to bounce around the gardens of their home on the North Shore of Sydney.
However, instead of bringing home Misha’s perfect brother, her parents brought home a baby with a cleft palate, Andrew.
Hospitals waiting rooms were Misha’s second home as Andrew became the first child in Australia to have his palate rebuilt. It was 1969.
"It completely changed the dynamics of our family," Misha said.
Andrew then developed Tourette Syndrome, a neurological disorder characterised by rapid, repetitive and involuntary muscle movements and vocalisations called ‘tics’.
People with Tourettes can live a normal life span, but they are often hermits, outcasts.
“People think he’s a freak,” Misha said. “He has this big loud voice and he can’t hear himself. People cross to the other side of the road”.
Misha resented Andrew. She was bullied by the kids at school, embarrassed by her brother who would never be normal. “I felt angry,” she said. “He didn’t know how to love me back”.
Research has found that children who have siblings with a chronic illness are twice as likely to experience emotional disorders, including depression, anxiety, and obsessive-compulsive disorder, and have a 1.6-fold increase in risk in poor peer relationships.
Studies also show that the families of children with chronic illness or disability experience higher levels of stress and disruptions to family functioning and relationships, and as parents and carers struggle to cater to the demands of these children, the needs of siblings are often neglected.
“There are some who manage really well and have a really strong relationship with their brother or sister, and there’s others who become suicidal,” said Kate Strohm, author of Siblings: Brothers and Sisters of Children with Disability and Founder of Siblings Australia.
“It’s very hard to talk about this stuff because siblings aren’t very good self advocates,” she said.
Dr Jeanne Safer, an American psychoanalyst who specialises in siblings and author of The Normal One, Life with a Difficult or Damaged Sibling, said she has seen it all.
“I’ve spoken to a woman whose autistic brother urinated in her mouth… I had a lady come to me whose brother took a contract out on her, to have her killed,” she said.
Dr Safer’s work supports siblings whose brothers or sisters have any usual affliction from drug addiction to down syndrome.
Her research, which involved 60 intensive, extensive interviews with the siblings of dysfunctional people, was designed to uncover what they all had in common.
According to Dr Safer, there are four character traits that these siblings have, regardless of whether their sibling has anxiety or anaphylaxis or autism. They are premature maturity, survivor guilt, compulsion to achieve, and her proudest discovery, fear of contagion.
Fear of contagion refers to a sibling’s anxiety that they might catch what their brother or sister has, even if the affliction is impossible to catch.
Jenny Koadlow, a psychologist and counsellor who specialises in disabilities, said the fear of catching the sibling's’ illness can be a cause of significant distress.
“The sibling sometimes feels scared, like maybe this will happen to me, so if they can talk and get the fears out it can help them manage, it can help them sleep, they can feel more comfortable talking about it with other people,” she said.
Dr Safer calls this affliction Caliban Syndrome, named after the subhuman monster Caliban, the antagonist in Shakespeare’s The Tempest. It represents the darkness inside people with dysfunctional siblings.
“When your sibling is dysfunctional you become ashamed that you are related, guilty that you have a better life, envious that nothing is expected of them, relieved that you are not the misfit to be scorned or pitied,” Dr Safer said.
Studies have found that while living with a dysfunctional sibling can cause distress for some, others cope well and are matured by the experience.
Socio-economic status, parental stress, family cohesion and the presence of consistent routines are key factors in determining the kind of impact this situation will have on siblings of people with a disability, addiction or chronic health problem.
Dr Safer believes parents play the most significant role in determining how a sibling will manage.
“Most parents do not deal with these situations well,” she said.
“Many parents chant the mantra ‘this will make you stronger, this will make you a better person’, which is part of the problem”.
Koadlow agreed, saying “sometimes the parents put that onto the kids, say ‘you should be compassionate’.
For Misha, her guilt has plagued her long into adulthood, through marriage, motherhood and divorce.
“I live with constant guilt when I’m around him. I feel guilty now, talking about it. I feel guilty because I could have been a better sister. I still have the little girl inside me, the childhood resentment… but I didn’t have the tools or support to show me how to deal with it”.
According to research from the Journal of Psychiatric Services, it is very important for clinicians to work to strengthen family relationships, which “loom large in determining the extent to which siblings are involved in the care of a brother or sister with disabilities”.
But the support for families is so often focused on the child with the illness, that the sibling gets completely overlooked.
Dr Safer believes siblings need to prioritise their own mental wellbeing before they can nurture their brothers or sisters who are ill.
“You have to say ‘I have a right to a good life, independent of what my brother or sister suffers’. It’s not only in contrast to them. And this is what my work is all about,” she said.
“And some siblings you can’t have in your life”.
Programs which support siblings of people with disability, chronic illness or addiction are few and far between, and they often lack adequate funding.
Strohm’s organisation, Siblings Australia has not been able to get government funding for her organisation for the last eight years.
“Siblings aren’t in policy or programs anywhere, nationally,” she said.
“And for me, that’s just a disgrace that there’s not something for these people… I just find it astounding in many ways that there isn’t more interest in the person who is going to have the longest relationship of anyone with the person with disability”.
Dr Safer said many psychoanalysts and therapists don’t even acknowledge the impact of a disabled sibling on their patients.
“Psychoanalysis is all about childhood, you know, family relations, but somehow somebody, everybody misplaced siblings in this deal!” she said.
However, Koadlow said it’s important not to create a problem when there isn’t one.
“There needs to be better services, but it’s tricky because they have to be services that don’t pathologise the sibling.
“They (the siblings) don’t need another problem, or to be told that they have issues.
“They just need some attention,” she said.
The Self Help Addiction Resource Center (SHARC) started a sibling program around two years ago after they realised that some of the siblings of addicts were more seriously and dangerously impacted than the addicts themselves.
“In one week, we had two horrible incidents – one sibling hung himself, and another got into a car and drove into a tree,” said Angela Ireland, Project Lead of Family Education Programs at SHARC.
“It [our program] is the first of its kind,” she said.
Katie*, whose younger brother’s drug addiction has led to domestic violence and completely divided her family, said the lack of parental support is the hardest part.
Her mother is so concerned that her brother will overdose or worse, that she is unable to acknowledge his unacceptable behavior -- even when he is physically violent with Katie.
“She just ignores it… every time they have a fight, even if she is shaking with fear, she’ll go and check on him, check that he’s still breathing,” Katie said.
“[He was] this little baby that I held and sang to, my best friend, who I protected when he was teased…. I can’t reconcile the beautiful little boy I used to know with this gaunt, emaciated drug addict,” she said.
Strohm said when we support the siblings, the benefits are twofold.
“We need to support siblings across their lifespan, because we know they have higher rates of mental health issues themselves.
“But it’s also such a tragedy that a lot of people with a disability become quite isolated, and a lot of siblings move away from their families because of the stresses.
“If we supported siblings from a younger age, they may stay involved with their brother or sister which would help them with that isolation,” she said.
Because as Dr Safer said, every child has special needs.
*Name has been changed
Correction: This post originally implied a car accident caused Andrew's cleft palate. However, these two events were unrelated, and the post has been updated to reflect this change.Suggest a correction