This article is part of a monthly series from members of the GPs Down Under (GPDU) Facebook group, a not-for-profit GP community-led group with over 6000 members, that is based on GP-led learning, peer support and GP advocacy.
“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Susan Sontag
AS doctors, we utilise that dual citizenship of two worlds professionally. We are smoothly bilingual; we understand many of the customs, rituals and symbols of the “kingdom of the sick”, and we cross the borders readily, every day.
However, it can be difficult to seek care with a sick child when you are a doctor because your roles in the “kingdom of the sick” become blurred, confusing and traumatic. It is even more challenging when your child is significantly unwell and requires prolonged or repeated hospital stays.
Being the parent of a sick child is like being a refugee. Often the borders are closed and the rest of your family, people you care about, are on the other side. Learning to straddle the “kingdom of the well” and the “kingdom of the sick”, managing the practicalities of everyday life and parenting, meeting the needs of siblings, and retaining a link, however fragile, to your own professional world can be deeply challenging.
In this article, I draw on my own lived experience as the parent of sick children and also on my conversations with my own doctor-patients and my colleagues in the GPs Down Under community to present some of the collective wisdom we have gained over many lonely and frightening days and nights in tertiary care. I’ve kept the comments general to preserve the anonymity of our children.
Children are not supposed to develop chronic illnesses in our culture. When our children become significantly unwell, it ruptures our ideas of our own future and the future of our families. As doctors, we often plan our futures many years in advance: we plan when we will achieve our fellowships, when and where we will establish our own practices, and so on.
As our expected narrative comes shuddering to a halt in the wake of a serious illness in our children, we lose our place in the world. What becomes important is a “day at a time” life, with endless contingency plans, and great unknowns stretching out before us.
We are often surprised to find ourselves without the tools to manage diseases we know well from the other side, and are blindsided by our inability to face the difficult questions from our children and their siblings: “is my brother going to die?”, “why are they putting a dead heart in my sister?”, “what is a stoma?” We cannot see whether we will resume our work, and if we do, how we will accommodate being permanently “on call” for our children in a way we did not predict.
Building a new narrative that builds a new way forward is like doing repair work on a shipwreck and charting a new course into the unknown. It is hard, relentless work that requires dogged optimism, and relentless role modelling for our children. As one child put it, “Mum can make anything seem normal”. It’s a difficult, exhausting skill.
Social groups, such as mother’s groups or school parent groups, become unfamiliar when you are the parent of a sick child. Suddenly, the talk of developmental milestones, choice of school, holidays and behavioural issues seem trivial and irrelevant in the face of our own challenges. It can be a profoundly isolating experience.
On the other hand, illness support groups can also be challenging. Once your role as a doctor is known – whether to disclose that is a difficult question too – it can be hard to let yourself participate fully rather than lead discussion. It is so easy to become the resident expert or support person in the group. Some parents also talk about becoming overinvested in the disease identity.
Your child needs to retain their dual citizenship and it is important to keep them grounded in their “normal” peer group and you in the “normal” world.
I don’t buy the idea that a “medicalised” child is badly managed: why should a child not be fluent in the language, customs and rituals of their enforced community? Unfortunately, it is often the case that we parents experience the slightly judgemental comment “they are very medicalised, aren’t they?” when our child uses a technical term, asks their own questions or knows the names of their medications.
Perhaps the most painful part of having a sick child is having your social world reorganise. People who you expect to help may show themselves to be incapable of doing so. The people who offer remedies – “have you tried dried walnut husks? My cousin’s friend swears by them” – and the people who offer slogans – “everything happens for a reason”, “God never gives you anything you can’t handle” – retraumatise us. Sometimes people, even close family members, desert us in the wake of our trauma. Sometimes this includes one of the parents of the sick child.
On the other hand, you may be shocked by the people who carry your pram up the stairs at the railway station or leave a pot of soup on the doorstep. It helps to understand that some people genuinely lack the experience to know what to do and will happily help if asked for something specific.
It is important that when you are managing visitors, that support should always channel towards the child and the immediate family. If visitors need support themselves, they need to seek it outside the immediate family.
Being a doctor changes the therapeutic relationship with the team. It shouldn’t, but it does. Health professionals may assume you know more than you do. As a GP, I must confess I didn’t know what to say when a tertiary specialist began a sentence with “as you would know from your understanding of the antileprous agents …” I can’t remember the last case of leprosy I managed, to be honest.
Others oversimplify things to treat you like a “normal” patient. Our questions can be perceived as challenges to the team instead of the genuine questions they are. We are embarrassed by our inability to take this in or reason things out. We are surprised of how good it feels when a patriarchal doctor makes a difficult decision for us when we obviously can’t. In the wake of serious illness, those decisions are often too much for us to bear and that weight needs to transfer to the team.
Hospital policies are frustrating. If it takes four health professionals – nurse, resident, registrar, anaesthetist – to put in a drip, why 2 days later is the nurse suggesting she try and resite it? We struggle to be a “good” patient and not be perceived as “difficult” because we know that impedes good care. But we are just as frustrated and angry as the average patient, particularly when we know what good care can be. Having your own GP is critical here, so they can play “bad cop” and be the “difficult” doctor asking the difficult questions instead of you. Or choosing the non-medical parent to ask the hard questions so that communication is easier.
Going back to work is fraught. It may involve a shift in career direction to incorporate the flexibility you need, or it may need to involve abandoning your career altogether for a while. This involves profound grief and loss after such a heavy investment in your future. It may also involve a relocation to an urban centre or even overseas for a time to seek treatment not available in Australia.
You cannot immunise your child against the psychological trauma of illness. Remember, for a child, particularly a preschool child, trauma is trauma. It doesn’t matter that the trauma is controlled and may be essential if they are to have a better life (or to live at all). From the child’s perspective, adults they trust participate in painful procedures and fail to protect them.
You can mitigate the risk of harm by explaining and comforting, but children who survive early childhood illness can carry sequelae of complex post-traumatic stress disorder, even with the very best parenting and care. They may need to come to terms with this repeatedly as they mature and deepen their understanding. It is hard to watch and feel helpless in the wake of their trauma. It is important to give them as much choice as possible in their treatment. Keeping open lines of communication, offering (but not insisting on) psychological care when they’re ready and maintaining a good GP relationship are all important ways to ensure you can detect and manage their distress.
But it is essential to be realistic: you have not failed because your child is anxious or angry or distressed by their own trauma.
Being a doctor-parent is difficult. Find your own support away from the team who supports your child. Don’t be afraid to seek help through agencies such as the Doctors’ Health Advisory Service (see contact details below) or the Medical Benevolent Associations in each state. And most importantly, find ways to forgive your own imperfections.
Louise Stone is a GP with a clinical, research, teaching and policy interest in mental health and doctors’ health. She practices in Canberra.
The statements or opinions expressed in this article reflect the views of the authors and do not represent the official policy of the AMA, the MJA or InSight+ unless that is so stated.