The actual implantation of the pacemaker was relatively OK. As my cardiologist said, having a pacemaker fitted was a walk in the park compared to the surgery I’d been through the previous year. I remember I had my usual anxiety freak out before the anaesthetic - I had the pacemaker put in under general anaesthetic because I didn't think I would cope with only a local, I don’t know how anyone does - to which the nurse said, not unkindly, ‘I’m just going to ignore you freaking out because we need to get on’ (or words to that effect). Which I thought was fair enough. Afterwards, I woke up and promptly vomited, as is my wont. The only really negative part of the hospital stay, which was only two days long, was an encounter with ‘the bad blood test doctor’.

He had, needless to say, come to give me a blood test. I don’t know why a doctor was doing the blood test, because doctors are notoriously bad at doing them - even they admit this. So there’s a tip for you, if you ever need a blood test, ask a nurse to do it. I’ve met one exception to this rule, a doctor in hospital after having my daughter. He did a blood gas test on me with no problems whatsoever, and very little discomfort to me, which is impressive as these are often very painful - more painful than a usual blood test because the arteries are deeper and are protected by nerves. (I can tell you this is true. I fear the blood gas test). But I fear blood tests, too. This was something this doctor wasn’t going to countenance. He accused me of being a baby because I was scared and crying - by that point I was partly crying with anger. This, me trying to get out of having the blood test and him trying somewhat aggressively to persuade me to have it, went on for some minutes. I can’t even remember whether he did the blood test in the end or not.

To me, this incident typifies the negative side of the doctor-patient relationship - even the medicine-patient relationship. The lack of care, the arrogance of the doctor, the seeing a person as a task to complete, the patronisation. The power dynamic is balanced in favour of the doctor - he is literally armed with a weapon (the blood test kit). It's a shame I can’t remember whether or not I had the blood test after all that, because it does matter who ‘won’ in the end. Parsons said that a core social expectation of being ill was to surrender to the care of a doctor; this means surrendering our narrative to someone else (Frank, 5-6) and we experience powerlessness and a lack of control, even over our own story. If I didn’t have the blood test in the end this means I took back a little bit of my narrative, I wrote a bit of my own story.

People with long-term illnesses may feel that the stories of their lives, their narratives, have been hijacked by illness - and medics play a part in this; even those who are kind and full of good intentions. Things happen to you when you are ill, things are done to you, often very unpleasant things that you would never choose to experience. Medical charts are the “official story of an illness”. The medical narrative (the doctor’s story) “trumps all others” (Frank, 5-6). Even in the publishing world, there are more bestsellers written by doctors than there are from patients (Best Selling Books by Doctors, 2025) - yet without patients the doctors would often have nothing to say. I suppose this partly comes from the ‘celebrity status’ of some doctors, either from media appearances or because they are famous for being at the top of their field(s). But I think it also partly stems from the general belief that doctors have status, power and are the proper heroes of the medical narrative, while the patients are just bit-part players. Frank calls this ‘asymmetrical heroism’ between doctors and patients. Doctors are seen as practising active heroism - doing the cool stuff - whereas patients practise the passive heroism of getting well (or not). Patients are subordinate (Frank, 93) and not even the main character of their own stories.

Bibliography

Best Selling Books by Doctors: Top Medical Reads for 2025 (2025). Available at: https://www.accio.com/business/best_selling_books_by_doctors (Accessed: 12 August 2025).

Broyard, Anatole, Broyard, Alexandra and Sacks, O. (1993) Intoxicated by My Illness and Other Writings on Life and Death. Westminster: Random House Publishing Group.

Frank, A.W. (1995) The wounded storyteller: body, illness, and ethics. Chicago: University of Chicago Press.

Parsons, T. and Bryan, T. (2013) Social System. 2nd ed. Hoboken: Taylor and Francis.

But here we are, and I’m turning over a new leaf. So this year, not only do you get information about Heart Month (click on links above or below), but I am also going to tell you a bit about my own experience with congenital heart disease. Don’t worry, this is the condensed version. I find it quite hard to write about my medical history without becoming inappropriately comic or (at the other end of the spectrum) overly miserable, in tone. I don’t know what people want, I suppose. I don’t know how interesting it is, really, for other people to read about someone’s medical conditions, especially if it’s someone they don’t know, and they don’t have any vested/personal interest in it.

Also, in real life, having a medical condition (or several), is mainly boring and/or stressful. It’s just not that interesting, either as the person experiencing the illness or someone who has to engage with that person on a day-to-day basis. A lot of it is just routine appointments, at vaguely the same times every year. Some of them include unpleasant tests/procedures and some of them are just ten minute chats with a doctor you’ve never met before. There is a lot of waiting - sometimes in actual waiting rooms, other times at home; for letters, emails, phone calls, texts, which may, in some way determine your life course. It’s not usually that dramatic, just annoying. Also, chasing medical professionals for information is A Thing.

There are dramas and scary times for all concerned, of course. Just to throw you off-guard and remind you that you are not actually a normal person. Examples: (a) 12-hour open heart surgery, (b) urgent and unexpected pacemaker battery replacement, (c) the cardiac catheterization investigation where you come out looking like you’ve been attacked by four vampires, (d) the MRI scan where you realise you are claustrophbic and literally run away to the church over the road. In case you are new to this, recovery always takes longer than you think it will.

My particular congenital heart disease is really three separate defects: transposition of the great arteries (TGA), ventricular septal defect (VSD) (commonly known as ‘hole in the heart’), and pulmonary stenosis. The quotations below are all from the British Heart Foundation webpages.

TGA

TGA is where the two main arteries in your heart are swapped around. This means:

Your pulmonary artery, which takes blood to the lungs to pick up oxygen, is where your aorta should be.

Your aorta, which takes blood high in oxygen from your heart to your body, is where your pulmonary artery should be.

Your pulmonary artery may also be narrowed (stenosis).

The swapping of the pulmonary artery and aorta causes a few problems, like:

The blood that’s pumped from your heart to your lungs to get oxygen goes around in a circle instead of into your body to deliver oxygen.

Blood that’s pumped from your heart to the rest of your body to deliver oxygen goes around in a circle instead of back to the lungs to get more oxygen.

If your pulmonary artery is narrowed, blood does not flow as well as it should.

Because of these issues, only a small amount of blood high in oxygen is moving around your body. Oxygen is only able to move into the body by:

A blood vessel (called the ductus arteriosus, or ‘duct’) that closes shortly after you’re born.

If you have another congenital heart defect that lets oxygen move around the heart like an atrial septal defect (ASD) or VSD.

VSD

The lower chambers of your heart (the right and left ventricles) are separated by a wall of muscle, called the ventricular septum.

If you have a VSD you have a hole in this wall. This means when your heart beats blood can flow through the hole.

Blood from the left ventricle (high in oxygen from the lungs) can flow into the right ventricle.

Blood from the right ventricle (low in oxygen) can flow into the left ventricle

Pulmonary stenosis (a type of heart valve disease)

Valve stenosis or narrowing means the valve does not open fully, it can block or restrict the flow of blood.

Approximately 1% of people are born with heart defects, making CHD the most common birth defect worldwide.

The physical effects of CHD vary from person to person - even people with the same types of CHD can have very different experiences. Many people with CHD need life-long medication, and/or may have a number of surgeries (major and minor) during their lives, but some people don’t. Each person has different limitations in terms of what they can do physically. Some people with CHD can run marathons; some people can’t walk more than a few metres, if that.

In an ideal world, everyone born with a heart defect should receive expert follow-up care throughout their lives, but this does not always happen in practice. People fall through cracks in the system, or live in denial and don’t want to engage with the medical profession. This latter can happen because people with CHD can feel ‘well’ for long periods of time and don’t feel that their condition is bad enough to do anything about. Plus, many people with CHD have had poor, if not traumatic, experiences of medicalisation in the past, particularly in childhood, and, understandably, don’t want to experience this again.

In my experience, the psychological effects of CHD are probably more pronounced than the physical, at least on a day to day basis - although that may change as I get older and less physically able. The two are quite closely intertwined, though. Being physically unable to do things you want to do tends to have a detrimental effect on people’s mental health. It is also hard to separate what is medical trauma or the effects of other problematic aspects of my (or anyone’s) life, but I think there are definite links between my early childhood experiences and my ongoing struggles with mental health, especially with anger and anxiety.

This post is already way too long and didn’t turn out how I thought it would. However, I hope it has been informative and encouraged people to at least think more about people with CHDs, and hopefully look at the links above and below for more information and ways to contribute to Heart Month, if that’s something you’re able to do.

Useful links:

British Heart Foundation - the UK’s main charity supporting people with all types of heart disease.

The Somerville Heart Foundation - a small charity doing great work supporting young people and adults with CHDs, including providing psychogical support.

Children’s Heart Federation - UK charity specifically focused on supporting children with CHD and their families.

Adult Congenital Heart Association - American charity for adults with CHDs.

The Children’s Heart Foundation - American charity for children with CHDs.

Share

For the first 20-ish years of care I saw the same cardiologist every year for my outpatients check up. This was a woman who went way beyond the call of duty when I was very young, by donating her own blood when I needed a transfusion and there was no one else with the right blood type. When she retired I transferred into the adult congenital heart clinic, where I had another woman cardiologist, who oversaw my surgery as an adult, when I was 30. I was one and three when I had the other two. She was also an excellent woman and I felt confident in her care of me. In both cases, I saw my own cardiologist every year, they knew about me (I guess they read my notes before seeing me - always helpful) and I felt like they were keeping on top of what was going on with my heart.

Alas, my lovely cardiologist moved to Canada, and since the pandemic, I have only seen my ‘new’ cardiologist (also a woman, hooray!) in person once in real life. I one of her minions once, then the rest of the time my yearly check-ups have been online. This is good, in some ways - mainly because it’s much, much less time-consuming as I don’t have to travel 2 hours into London to attend the hospital in person. We also now have access to our own records online, which is very useful and interesting. We can see our test results, clinic reports and letters even before they go to the GP. We can change or cancel our appointment times (for some things). The only problem with all this is that I feel like have lost my confidence in my cardiologist - mainly because I haven’t seen her for several years now, online or otherwise. I feel anonymous - a patient, not a person.

Subscribe now

I totally understand that she is almost certainly rushed off her feet and probably suffering with stress (this is the NHS, much as I love it) but I think I just need to be seen ‘as a person’ by someone whose job it is (partly) to keep an eye on me, as it were. I don’t want to be an anonymous patient that means nothing to anyone. I realise this probably sound entitled, and I know I have been very fortunate with my care and my cardiologists in the past, so I’m probably expecting too much. However, as someone with a lifelong, life-limiting, and sometimes life-threatening, illness, I need someone to be there for me, preferably someone I have confidence in. It’s not that I think my current cardiologist is bad at her job, it’s just I haven’t seen her enough to glean any evidence that she isn’t. I want her to care if I live or die or suffer or whatever. I want to be seen as a human being and not just a name on a form or list. I want to be known.

The nature of congenital heart defects is (obviously) that they are life-long. We (I) need medical professionals to walk beside us long-term. It’s not the same as having a doctor who treats an acute condition and you never see them again. A relationship forms and it does become more than doctor-patient, it becomes person to person (or is should do). Of course this can apply for any long-term/lifelong condition, not just CHD.

Anyway, my next annual check-up is scheduled to be in person, so that’s something, although whether or not I will see my actual allocated cardiologist is not certain.

I went for my annual cardiac ultrasound (AKA echocardiogram AKA echo - not to be confused with an eletcrocardiogram AKA ECG) yesterday. I have to go to London for this, as this is where my cardiologist(s) has been based since I first started going to see them, aged 0. I used to go to Harefield Hospital, (in Harefield, a village just north of London) which was about a three-hour drive from where we lived when I was a child. This is where I went from 0-actually I can’t remember when I got transferred to the Royal Brompton, maybe not until my late 20s. I was born with congenital heart disease (CHD), now also know as having a congenital heart condition, and now less often known as a congenital heart defect, for obvious reasons. Mine was/were/is/are transposition of the great arteries, pulmonary stenosis, and ventricular septal defect. The results of the echo have to be sent to the cardiologist in time for my appointment (online by video call) at 9.30 on Monday morning. I also had to have a blood test, for the same reason.

Having an echo is a boring and reasonably uncomfortable experience. I don’t remeber it being this uncomfortable when I was younger - I think partly this is just me falling to bits (stiff legs, bad back, pins and needles if I lie still for a long time) and partly I think it takes longer now that the technology is better. This may sounds counterintuitive, but the equipment can ‘see’ a lot more now, so there is more scope to find out more and record more detailed images, which takes longer. It’s for a good cause, but it still not very enjoyable - but it is also still one of the least invasive cardiological (is that a word?) tests you can have.

A possibly unexpected and maybe disconcerting aspect of a cardiac echo (if you haven’t had one before) is the weird physical intimacy that happens betwen the patient and the sonographer (the person doing the ‘scanning’). This is also something that I’m sure is a more recent thing, because previously (at least in my experience) the patient would just lie on their back and the sonographer would sort of stand over then and scan them (more like when you have a scan when you’re pregnant, if you’ve ever had one). Now, the patient (me) has to lie on their left side for most of the echo, sort of in the recovery position. This makes sense, because gravity helps the equipment ‘take better recordings’ of the heart as the heart is pulled down nearer the probe. However, it also means that the sonographer, who is on your right, has to reach right over you to get the probe in the right positions.

I don’t really know how long the echo actually took, because I sort of lost track of time in the weird semi-dark, windowless room, and things always seem to take longer than they really take when you’re uncomfortable. I could see my own insides on the screen on the wall - my heart looked like a mini Cthulu, its valves writing around like little mishapen arms and the chambers like pittish mouths. I didn’t feel very kindly towards it, which was not very nice of me really, as it has and does work very hard for me, every day in difficult conditions. Poor heart. I should be kinder to it. It just looked so unfriendly via sonograph.

I also had a blood test on the same day, inclduing a chat about why you (usually) shouldn’t ask a doctor to do a blood test - they have the knowledge but not the experience. The phlebotomists were friendly and they have installed a large screen on the wall playing non-stop videos of cute wild animals to distract people while they’re having their blood taken. My veins were hiding, as usual, but the phlebotomist got enough blood out after a couple of (fairly painless) tries.

Yesterday, I had my annual check up with the cardiologist and nothing has really changed since last year’s, which is good. We plough on.

"Eating, and that feel of food in the mouth, is all part of comfort and affection and

warmth, and I think that a lot of the reason that I turned to food was because I was

actually quite a lonely child."

- Nigel Slater

My earliest memory of school involves food. Something I don’t think I have ever eaten since: stuffed eggs. The memory is blurry, but there was definitely hard boiled egg and salad cream involved; the egg being chopped into little bits and mixed with the salad cream and then...what? Stuffed back into the egg? I guess so. As the cooks were five years old, I don't imagine there was any mustard or paprika involved. There may have been chives, but I might have made that up.

[Aside: while researching recipes for stuffed eggs I found an interesting website of historical recipes. Worth a look - and contains the only reference to stuffed eggs (as opposed to devilled eggs, which are really the same things but I was being pedantic) I could find. My favourite version of the medieval recipe for stuffed eggs is this: Source [Liber de Couina (Medieval Kitchen #118)]: Eggs: to prepare for stuffing. To make stuffed eggs, cut each one in half when it has been well cooked and [is] thus hard. Then remove the yolk and take marjoram, saffron, and cloves and mix with the yolks of those eggs; and mash it thoroughly, adding a little cheese. For each eight eggs, add one raw egg. This done, fill the egg whites with this mixture. And fry in good pork fat, and eat with verjuice. Mainly because I like the sound (literally and metaphorically) of verjuice.]

My next memory of school is being knocked over by a bigger child running in the playground (they were running, not me). I was just knocked over and fell down the steps, ending up with, ironically, given my previous egg-related anecdote, a lump the size of an egg on my forehead. Fun times. As you may have gathered, I wasn't a massive fan of school. But the problem wasn't the schooling (apart from PE, which I saw as pointless and just something made to showcase my failings and the other children to bully me/laugh at me as appropriate. I might write more about this later. The problem was the other children. Or perhaps I should say the problem was me - after all, I was the one who was different. I spent my school days avoiding all the children I was scared of, and having my learning interrupted by teachers having to deal with kids who didn't want to learn. Things got better as we got older, but the bullying didn't stop. Human beings are, after all, animals, and animals attack and/or reject any one of their kind who is different, it's just animal logic/instinct. I remember, aged about seven, looking at the other children in my class and wondering what it was like to be them, to be normal. Woe is me, etc.

One of my theories is that not being seen as 'normal' makes you feel something other than normal. As adults most people learn that there is no such thing as normal, and that maybe normal isn't something we need to strive for, and even that it might be a good thing to be a bit different to the rest of the pack. But children, and, I suspect, some (most?) adults, don't have this insight. To them, there is a normal and abnormal. At least we don’t use ‘subnormal’ anymore, at least not in polite conversation. The normal children look a certain way, have the same(ish) physical abilities as everyone else and…something else imperceptible. The abnormal ones are the ones standing on the edge of the circle, in a cliche of ‘on the outside, looking in’ - often literally and always metaphorically.

“...her memory is of an intense humiliation about being different, a shame she took upon herself” (Bull, 87)

You feel this yourself and then other people make you feel it even more. Once, when I think I was about seven, a teacher asked me if I wanted any help using a pair of scissors. I was quite taken aback, as I was perfectly capable of using scissors on my own. Being small and of not much brain, I thought she was asking me if I needed help with the scissors because of my heart condition, and I felt embarrassed about this, like it was an insult to my intelligence. Me thinking this made no sense at all, really, but I think I associated my heart condition with not being able to do things, and I felt that the teachers did, too. Being intelligent was (and, I suppose still is) important to me, because I felt it was my one strength (and I still do, to a certain extent although now of course I don’t think myself as clever as I did when I was six).

I was...unusual...in ways that weren’t obviously anything to do with my heart condition (although see Bridges’ ideas about the Polyvagal Theory and autism), ways that I now think were early signs of being autistic. I was very slow rat changing for PE - even into high school, I could never learn to swim, I was massively anxious about many things, particularly people pushing me or being too near me, being hit by flying objects (balls), couldn’t skip,couldn’t climb, couldn’t skate, couldn’t jump off or on to things, had no balance and little coordination. I found things like plaiting My Little Pony’s tail really tricky - for ages I used to just twist the hair using two strands instead of three and I remember the frustration I felt at not being able to plait it properly. I often felt that I was the only one who couldn’t do things - it happened a lot - forward rolls, plaiting hair, skipping. I preferred to talk to the teachers and dinner ladies rather than other children, although I did have some friends. I had trouble with frenemies, though - although that word hadn’t been invented yet. One particular ‘friend’ at primary school apparently used to bully me - although I can’t remember any of it, my mum noticed and ‘had a word’ with this friend’s mum (I don’t remember that either). I was a bit ‘forward’ with adults - people said I was cheeky, but I just talked to them like my peers. A lot of my social life, such as it was, was with adults - I sang in a church choir and later in a choral society that was mainly made up of people my parents’ age or older. I went to Brownies but I didn’t like the other girls and they didn’t really like me either as far as I could tell.

In any case, all this being different made me think there was/is something wrong with what I am. People are basically telling you, either kindly (medics, parents) or cruelly (school bullies), that you are not the same as everyone else, that you are ‘other’. I think it is only a short step from there to self-doubt, low self-esteem, low self-efficacy, and at the worst end of the scale, self-hatred. And then if you add in the lack of attunement/attachment experienced by babies and young children with congenital heart disease (CHD), it doesn’t paint a very happy picture.

In their study (2014) Cornett and Simms found that, for adults with CHD, “The desire to have a ‘normal’ life was profound” (400). There are some upsetting quotations from patients, like George, who said: “I’ve always felt I’m faulty, I don’t fit in...you’re an outcast...I’ve always felt like a reject” (Cornett and Simms, 400). George does a good job of expressing how I’ve felt on many occasions during my lifetime. It is something I haven’t really talked about with my parents or friends, apart from saying seemingly silly things like ‘I think I might be an alien’ - but at times I really mean this. Actually, most of the time. Sometimes, I feel so outcast from my peers that I feel like I’m not even part of the human race. Again, I realise this sounds dramatic; ridiculous even, but the feeling of alienation for people with any chronic illness or disability can be severe. “...[T]he patient’s perception [is] that their world is at conflict with that of their healthy peers” (Cornett and Simms, 403).

“...a transformation of the essential conditions of their being in the world. They have become aliens, even exiles in their own land.” (Robert F. Murphy, 1987, p.111 in Charmaz).

Bridges, H. (2015) Reframe your thinking around autism: How the Polyvagal Theory and brain plasticity help us make sense of autism. London: Jessica Kingsley Publishers.

Bull, K. (2016) Open hearts: stories of the surgeries that change children's lives. London: Elliott and Thompson.

Charmaz, K. (1995) 'The body, identity, and self:', Sociological Quarterly, 36(4), pp. 657–680 Available at: 10.1111/j.1533-8525.1995.tb00459.x.

Cornett L, 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. 2014 Mar;19(3):393-406. doi: 10.1177/1359105312471569.

Slater, N. (2013) Eat. London: Fourth Estate.

When I think of cyborgs I picture a Terminator, or perhaps one of the Cybermen from Doctor Who. Not me. And yet, because I have a pacemaker, I am a cyborg*:

a person whose physiological functioning is aided by

or dependent upon a mechanical or electronic device.

Dictionary.com**

There are plenty of us out there who fall into this category; people with pacemakers, mechanical valves, artificial legs, eyes, hands, whatever. Some people would argue that even people who wear glasses are cyborgs.

I don’t know whether people who wear glasses really count as cyborgs, though. Mainly because the glasses are not a part of them in the same way that the pacemaker is part of me – it’s in me and literally intertwined with me. I can never be without it. It’s part of the mechanics of my body in a way that is very different to the interaction between someone and their spectacles. However, I see the flaws in my argument – what about people with removable prosthetic limbs? for one.

The idea of people-technology hybrids as being more than human is an intriguing one. Cyborgs are more than human in that we’re humans with ‘add-ons’, as it were, but not usually in the sense that we’re enhanced beyond normal human capabilities. However, we are also not less than human. We usually think of cyborgs in the context of science fiction, where they’re quite often portrayed as the bad guys; and we think of them as being somehow less than human – robots, rather than people enhanced with machinery – so the term ‘cyborg’ can carry quite negative connotations. [I’m not sure whether the Cylons in Battlestar Galactica really count as cyborgs, but there is an excellent and fascinating case in point if they do.] As well as this, some people can get a bit freaked out when thinking about machine-human hybrids. Being part-machine is not natural, it’s not ‘normal’, and humans tend not to like things or people that don’t fit their ideas about what is natural and/or normal. Bizarrely, when I went to meet the surgeon before my heart surgery in 2008 the thing he said that upset me most was that I might have to have a pacemaker. I still can’t coherently explain why. It just seemed wrong. But now I know it’s perfectly alright, and being a cyborg has improved my life tremendously.

It seems that the definition of who or what is a cyborg has moved far beyond my personal opinion and what the original definition of the word referred to, and at least one person, Amber Case, is arguing that “we’re all cyborgs now” (in 2011!) because we are [almost] constantly connected to technology. (Amber also has a more recent talk on YouTube, which is really interesting, although it’s still not very new (2018). What is surprising is how far ahead her talks are (to me) - she is talking about AI in 2018, when we really only started to (knowingly) embrace it on a day to day basis in 2022-ish).

Interestingly, not every dictionary defines “cyborg” in the same way. Some define cyborgs as being fictional or hypothetical, and as someone who is technologically enhanced beyond normal human capabilities. However, if one goes back to the original of cyborg (cybernetic organism) as someone who is part-machine and part-human then cyborgs certainly do exist, although most ‘real’ cyborgs are only enhanced ‘up’ to, rather than beyond, normal human capabilities (if that). Even with my pacemaker I’m not going to win any races! However, I’m pretty sure I’m not fictional or hypothetical…

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.

Subscribe now

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.

I wrote this a while ago, about my pacemaker box change in 2015, but I wanted to share it now because I had another new pacemaker box put in last Monday and the events and feelings described here were much the same this time around.

***

Fear of medicine - the colonisation of the body (Frank, 172)

In March 2015, I went for a routine pacemaker check and discovered my pacemaker’s battery was about to run out and I needed a battery change straight away. I had been feeling extra tired for a while, but battery failure had not occurred to me, as it was supposed to last about ten years and I’d had the pacemaker fitted in 2009. So, all of a sudden I was going to be staying overnight in a hospital in London, about two hours away from home. My mum was at our  house, looking after our then just-turned-two year old daughter, so I called her, and luckily she was able to stay a couple of days longer. My main concern at the time was that we were due to fly to Glasgow for my brother in law’s wedding on the Friday (this was Wednesday, if I remember rightly), and I wasn’t sure I would be able to so soon after having my battery changed. 

A few hours after my original outpatients pacing check, I found myself on a trolley going to the cath(eter) lab where they were going to do the battery change. When I’d had my pacemaker put in I had a general anaesthetic, but this time, as it was only a battery (or, as it’s called, box) change, it would only be a local and some sedative, so I would still be awake for the procedure.  It reminded me a bit of when I gave birth and they administered the spinal block - in the way the doctor kept checking how numb I was in the relevant bits of my body. It was all a bit weird. A bit like at the dentist - although it didn’t hurt as such, I could still feel the rummaging around (there is no other way to describe it) in my chest trying to get the old pacemaker box out. My original one had been put in quite deep and in an awkward place, apparently, so it almost took longer to find and disconnect the old battery than it did to implant the new one. It was uncomfortable, and sometimes it was a bit painful. I squeaked on several occasions and the doctor thought I was too anxious (you’d be bl**dy anxious if you were being cut open and a strange man had his hand inside your chest cavity) so the anaesthetist gave me some more sedative. I’m not sure how much difference it made.  

It occurred to me afterwards that in no other situation would it be OK for someone to lie awake and be cut open and have objects removed and implanted into their body. It hurt - obviously not as much as if I had had no anaesthetic and sedative at all but it was an unpleasant experience. Frank talks about  the “...troubling analogy between torture and medical treatment”, and indeed  it is scary how similar these two things can be. If it was not for the medical setting, what I and many, many others have been through would be classed as torture. It is only because it’s seen as being for our (own) good that it is seen as a positive experience as opposed to a serious crime. 

 But the effect on the body and mind is/can be the same as if it really were torture instead of treatment. The body and mind, at a basic reptillian  level, can’t tell the difference between torture and treatment. Hence there are lots of people out there with PTSD as a result of medical procedures. I once read that having open heart surgery is the equivalent of experiencing a serious car accident  - and I am sure this is the case in terms of the effect on both the body and the mind. But, although the situation is getting better, there is still very little support out there for people who have gone through heart surgery, or long term medical treatment/interventions. 

“...the body belongs to a person other than the person whose body is used to confirm [the belief]” (Scarry in Frank, 173)

Although we, the patients, are being helped by the doctors performing the interventions we experience, the reality is that there are times, for some of us many times,  when we are not in control of our own bodies. I expect it is easy to read these things and not really realise the whole sense of them, especially if you have been fortunate enough never to have had a serious illness/condition/injury. Patients experience a massive lack of control over their own bodies and, perhaps to a lesser extent (or perhaps not), over their life choices. On an incident by incident basis, there are times when they literally have no control over their own bodies - they may be unconscious, or they may be sedated, or they may be awake and physically able but they have to submit to the medical treatment for their own good. There is no choice - the patient’s body and life have been colonised, both by their illness and by ‘Medicine’.  I’m not sure it is possible for a healthy person to fully understand how this is, what this is like, because I don’t think it’s like anything else. In a medical setting we stop being people and start being patients - a word I have overused here, but I don’t know how else to call us. Dan Gottlieb posits that “we become their patients and live in their hospital” - we are colonised (Frank, 10).

“Body-selves are unmade in all sufferings” (Frank, 179)

Even when the ill person is cared for this does not necessarily lessen their suffering - indeed the treatment can be the cause of the suffering (Frank, 179). This perfectly illustrates why the argument that it’s for your own good should never be used with anyone, especially not children. Of course it helps if we are given treatment by people who care about us, and, more importantly, demonstrate that care (in ways other than by giving us medical treatment), but it doesn’t mean we suffer any less.

How should care be demonstrated?  We need to know we are valued as human beings with feelings and minds, we need to be spoken to as if we are people (because we are people, even if we forget this ourselves sometimes), as valuable as doctors, as valuable as anyone else. But more importantly we need to be listened to and ‘heard’. This kind of care, this chesed (lovingkindness), might not lessen our physical sufferings, but it might do something to ease our minds.

Reference list:

Frank, A.W. (1995) The Wounded Storyteller. Chicago [u.a.]: Univ. of Chicago Press.

Subscribe now