Being the doctor-parent of a sick child: coping with trauma. By Dr Louise Stone
This article first appeared in MJA Insight in two parts in 2019:
https://insightplus.mja.com.au/2019/11/caring-for-a-chronically-ill-child-the-bigger-picture/
https://insightplus.mja.com.au/2019/7/on-being-a-doctor-parent-of-a-sick-child-challenges-and-practical-strategies/
As doctors, we are used to dealing with trauma. But when trauma occurs to our own children, the experience can be profoundly distressing.
In this paper, I draw on my own lived experience as the parent of sick children, but also my conversations with other doctor-parents, including my colleagues in the GPDU 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.
Narrative shipwrecks
No-one expects children to become chronically ill. We immunise them, protect them, challenge them and nurture them, and we expect them to continue to grow up healthy. It ruptures our ideas of our own future and the future of our families when our children become significantly unwell. As doctors, we often plan our futures many years in advance. When our expected narrative comes shuddering to a halt in the wake of a serious illness in our children, we can lose our place in the world. (1) 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.(1) It is hard, relentless work that requires dogged optimism, and relentless role-modelling for our children. As one child of a doctor parent put it “mum can make anything seem normal”. It’s a difficult, exhausting skill.
Existential challenges
A child’s serious illness or death can profoundly disrupt our understanding of our own faith and beliefs. We like to believe that everything happens for a reason, and that we have more control over our destiny than we actually do. It makes us feel secure. People who have not had their world view disrupted by circumstance tend to operate with the “just world theory” (2) that there is some sort of fairness or logic behind misadventure or disadvantage. When a baby is born with a profound disability, or a child dies from a random illness, we begin to question everything. The age old question of why bad things happen to good people has challenged spiritual leaders and philosophers for centuries, so it is understandable that we may question our beliefs and values at this profoundly difficult time. (3)
When our communities cannot or do not support us when we need them so deeply, the sense of betrayal is compounded. (4) Medicine is one of these communities: it is deeply distressing when medicine is unable to help your child, when you have personally invested so much in helping others.
Interpersonal trauma
Social groups, like 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. (5-7) On the other hand, illness support groups can also be challenging. (8) 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 over invested in the disease identity, and their lives can become dominated by awareness campaigns and fund raising. (9)
Your child needs to retain their dual citizenship of the “Kingdom of the Well” and the “Kingdom of the Sick”, and it is important to keep them grounded in their “normal” peer group, and you in the “normal” world. Unfortunately, it is often the case that we parents experience the slightly judgemental comment “s/he is very medicalised isn’t s/he?” when our child uses a technical term, asks their own questions or knows the names of their medications. Why should a child not be fluent in the language, customs and rituals of their enforced community?
Perhaps the most painful part of having a sick child is having your social world reorganise. (10) People who you expect to help may show themselves to be incapable of doing so. The remedy offerers (“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 your partner. 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, you understand Ring Theory (see Box 1) Support should always channel towards to child and the immediate family. If visitors need support themselves, they need to seek it outside the immediate family. (11)
Childhood trauma
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 PTSD (see box 1), even with the very best parenting and care. (12)They may need to come to terms with this repeatedly, as they mature and deepen their understanding. (9) 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. (13) But it is essential to be realistic: you have not failed because your child is anxious or angry or distressed by their own trauma.
Remember too that your child is likely to be lonely. Their social supports at school, in sporting groups, or even just in the neighbourhood see your child erratically. Anything you can do to support those relationships is helpful.
Vicarious trauma
Siblings experience vicarious trauma. (14) It is important to consider and manage this as best you can, and to ensure they continue to experience the best love and care you and your family are able to offer. (15) They need their role as an empathic support to their sibling acknowledged and valued in the family system.(16)
Remember that you, too, are traumatised. (13) You have experienced years of holding your child down for traumatic experiences, surviving crises, and planning for contingencies. You have felt helpless in the wake of this continued trauma, and you may well have nightmares, flashbacks and so on. It is important to seek appropriate support. (14)
You also need space to talk about things that feel shameful. (17) You may have feelings you don’t like: it is not unusual to resent a sick child, or be angry with them, and this may not sit comfortably with your values as a parent. (17) (6) A good psychologist or GP can make space for these emotions to be expressed, without judgement, and then you can deal with them and go back to the relentless job of compassionate parenting. We often need someone to remind us that we are doing the very best job we can as parents: it is so easy to feel we are failing on all fronts.
It is profoundly helpful to have space to grieve the losses you have as a parent. In a culture where parenting (and particularly mothering) is held in such unrealistically high esteem (7) it is hard to find space to honestly express how difficult it is to manage the financial, psychosocial and professional cost of caring. Parents can find the burden of caring can impact their relationship to each other (18) and to the siblings of a sick child. (19) (16) When a child is very unwell, there is also grief around the child themselves. We grieve the well child with the future we wish they had, and when we deeply empathise with their pain and suffering, we can experience deep vicarious trauma. (4, 5, 13)
Professional challenges
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 may also need to talk through your professional challenges. It is hard to see parents who complain about the burden of parenting a child with minor illness, and you may be surprised how enraged you can feel when your own child is facing life-threatening disease. You may struggle to make objective decisions about patients who have similar symptoms to your child as well.
Being a doctor-parent is difficult. Find your own supports away from the team who supports your child. Don’t be afraid to seek help through agencies such as the Doctors’ Health Advisory Service (www.dhas.org.au) or the Medical Benevolent Society (https://mbansw.org.au) And most importantly, find ways to forgive your own imperfections: your child is neither a warrior hero winning their battle against cancer, or a helpless victim of an unfair and undeserved disease disaster. They have agency, even if they have little control. The key to survival as a doctor parent is to recognise what you can do to assist them in their journey, and to do that as openly, assertively and warmly as you can.
Ring Theory: Comfort IN, Dump OUT (11)
Draw a circle. This is the centre ring. In it, put the name of the child at the centre of the current trauma. Now draw a larger circle around the first one. In that ring put the name of the people next closest to the trauma (perhaps the siblings, and then the parents). Repeat the process as many times as you need to.
Here are Silk’s “kvetching rules”.
“The person in the centre ring can say anything she wants to anyone. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the centre ring.
Everyone else can say those things too, but only to people in larger rings.
When you are talking to a person in a ring smaller than yours, someone closer to the centre of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it. Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you". Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."
If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.”
Essentially, Silk expects support people to provide comfort inwards, but seek their own support outwards
[diagram]
Complex PTSD
Complex PTSD is a disorder associated with early trauma.(20) It consists of clusters of symptoms, including
1) alterations in the regulation of affective impulses, including difficulty with modulation of anger and being self destructive,
2) alterations in attention and consciousness leading to amnesias and dissociative episodes and depersonalizations,
3) alterations in self perception, such as a chronic sense of guilt and responsibility, chronically
feeling ashamed,
4) alterations in relationship to others, such as not being able to trust, not being able to feel intimate with people,
5) somatization: the problem of feeling symptoms on a somatic level for which no medical explanations can be found, and
6) alterations in systems of meaning (loss of sustaining beliefs, and/or loss of a sense of a secure future)
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