Villains and heroes
Trauma and chronic illness "warriors"
This post is about two opposing views (not the only views) of chronically ill and/or disabled people: The one some of us have of ourselves, which can be negative and self-hating (we’re villains), and the one that some other people have of us, which is to see us as heroes or warriors. Both of these views are damaging to people with chronic illness and disabilities.
“If they are not given any understanding of why unfamiliar people are doing alarming and horrible things to them, children often think they are being punished for some baffling misdemeanor” (Bull, 107)
Even now, I assume I have done something wrong if that’s at all possible to do in the situation I’m in. If someone doesn’t reply to my email, I think it must have been something I said. I remember, as an older child/teenager, raging against nothing because I felt I was always being punished for some unfathomable crime I hadn’t committed. It’s not just that medical procedures can seem like a punishment, but also having the illness/defect in the first place. I never asked, ‘why me?’ in so many words, because I think, as Professor Umbridge says in Harry Potter and the Order of the Phoenix, “[D]eep down you know you deserve to be punished”. I guess it was a way of trying to rationalise things that had no ‘reason’ for happening, at least no reason in the moral, non-biological sense. As children, we’re taught that bad things will happen to you if you do bad things or, worse you are bad. I think the feeling of being bad, being guilty of something, being wrong, being fel, is probably part of depression and probably also part of what makes one depressed, so it’s a bit of a vicious circle really. One can never get quite right with the world - we don’t fit into it like everyone else seems to.
You can see why any child might see medical treatment as a punishment - I would not be surprised if adults did either. Various pieces of research carried out with children and adults with congenital heart defects/disease (CHD) has shown that people in the CHD population are several times more likely to develop post-traumatic stress disorder (PTSD) than the average person: A study carried out by Meentken et al in 2017 showed that 12-31% of children undergoing cardiac surgery develop PTSD and 12-14% show elevated post-traumatic stress symptoms (PTSS) (Morton, 198). Deng et al found that 11-21% of adults with CHD had PSTD compared to 3-5% in the general population (Morton, 198).
This is hardly surprising, even if we only look at one aspect of what a person with complex CHD generally goes through. Children/teenagers (I don’t know up to what age this is considered acceptable) are forcibly held in order that they can receive medical treatment. In a study by Bray et al (2015, 2018) 81% of medical professionals reported children being forcibly held frequently or very frequently despite potential fear of future procedures and contribution to PTSD, and in defiance of professional guidance, which states that “Clinical Holding” , as it is known, should be a last resort (Morton, 198). To make matters worse (possibly), it is often the parents of the child who are asked to forcibly hold them, potentially leading to fear and/or distrust of the parent. Van der Kolk says, “Immobilization is at the root of most traumas” (84) - it is easy to see how children with CHD develop PTSD or other post-traumatic stress reactions.
“...each developmental stage comes the risk of experiencing psychological and emotional difficulties that may result in a ‘cumulative’ deleterious psychological impact…” (Cornett and Simms, 394).
Because congenital heart disease is always with us, there is no end to the risk - as described by Cornett and Simms in their paper. It is a chronic condition. Sometimes, a defect is repaired and the person only has to check in with their cardiologist once a year and never has to have any further surgeries or procedures, but this is quite uncommon. Most people with CHD need at least lifelong follow-up outpatients’ appointments, and many require further interventions and surgeries throughout their lives. It can easily be surmised how these experiences could “result in a ‘cumulative’ deleterious psychological impact…” (Cornett and Simms, 394).
The sick person as hero or warrior
Cornett and Sims also make the point that this emotional impact on the child often remains hidden (394). Sick children are told to be brave, to be ‘good’ for the doctors and nurses, even when it is totally unreasonable to expect them to do this. They (or at least we, I hope it’s better nowadays) were taught to suppress their feelings, emotions and negative reactions to medical treatment. Morton makes the point that rewards, such as bravery stickers, only serve to reinforce this narrative and could encourage children to suppress their feelings instead of talking about and trying to deal with them in a healthier way. (Of course that presupposes there is someone for the children to talk to that can help them).
The idea of ill children being brave fits into the wider ‘sick person as hero/warrior’ narrative that is so prevalent today (and perhaps always has been). Susan Sontag discusses the idea of the ill fighting a battle - the warrior motif - at length in her seminal work(s), Illness as Metaphor and AIDS and its Metaphors (1979/1991).
“...trauma almost invariably involves not being seen, not being mirrored and not being taken into account” (van der Kolk, 135).
By introducing, encouraging, and reinforcing the idea of the ‘brave sick child’ or the ‘sick person as hero/warrior’, parents, carers and medical professionals are not seeing the sick child or adult. They are looking not at them, but at a metaphor, one that they have made in order for them (not the sick person) to be able to deal with the presence of sickness in their lives and in society. For some people, the only way sickness is acceptable is as something to be fought against and beaten. The sick person has no one to mirror them, because people’s desire is not to be ill. Where then do they/we look for recognition and representation?
Sick or disabled people who don’t want to fight or don't’ want to take on the hero persona and be a beacon of positivity are not valued - instead, they are ignored (not taken into account), mocked, or vilified for being a drain on society. I attended a conference for congenital heart defect patients where I was told that people are more likely to donate money to charity if they read/see stories of ‘heart warriors’ than about the reality of living with a heart condition. Cute babies with heart surgery scars (I even found a picture of one when I searched Unsplash for a ‘hero’ photo for this post!) will quite possibly grow up to be traumatised adults with mental health issues - not so cute.
We’re not warriors, and most of us are definitely not heroes. We’re not here to help you feel better. Mainly we’re just tired.
References:
Bull, K. (2016) Open hearts: stories of the surgeries that change children's lives. London: Elliott and Thompson.
Cornett, L. and Simms, J. (2014) 'At the 'heart' of the matter: An exploration of the psychological impact of living with congenital heart disease in adulthood', Journal of Health Psychology, 19(3), pp. 393-406.
Cornett, L. and Simms, J. (2014) 'At the 'heart' of the matter: An exploration of the psychological impact of living with congenital heart disease in adulthood', Journal of Health Psychology, 19(3), pp. 393-406.
Frank, A.W. (1995) The wounded storyteller: body, illness, and ethics. Chicago: University of Chicago Press.
Morton, L. (2019) 'Using psychologically informed care to improve mental health and wellbeing for people living with a heart condition from birth: A statement paper', Journal of health psychology, 25(2), pp. 197-206 Available at: 10.1177/1359105319826354.
Sontag, S. (2002) Illness as metaphor and AIDS and its metaphors. Reprint in Penguin Classics edn. London [u.a.]: Penguin Books.
van der Kolk, B. (2014) The body keeps the score. East Rutherford: Penguin Publishing Group.