I think there is a burden of responsibility for children and adults with congenital heart disease (CHD), which is related to the idea of ‘heart warrior’ or ‘sick person as hero’. We feel a duty to be/act as normal as possible now we are ‘fixed’ by whatever surgery or treatment we may have had and back in society/back to school- back to a ‘normal life’.

Sandeep Jauhaur, in his book Heart, relates the story of Jacqueline Johnson, who, in 1952, was the first person to have “hypothermal treatment” (cooling down the body to hypothermic levels in order to slow down the heartbeat enough so that the heart can be operated on). He ends the narrative by saying, “By the end of the month, she was just another girl at school”.  Jauhaur shows no thought for  the girl’s feelings or aftereffects of surgery. Jacqueline is never going to be “just another girl at school”. Even if she appears that way to her parents, doctors and even her peers, I seriously doubt that she would have had no psychological reactions to her surgery, or that she would not have been seen as ‘different’ by her peers and treated as such when she returned to school. It is possible to do ‘normal’ things with CHD, but, for better or worse, your outlook on life is probably not going to be the same as the people around you.

[missing school and being slow] “served to underline in some young minds that there was something fundamentally ‘wrong’ with what they were” 

Kate Bull, Open Hearts

Somewhat miraculously, I didn’t miss a massive amount of school, but probably more than most of my peers.  Almost every cold would turn into a chest infection, which meant days of lying on the sofa, taking lots of antibiotics and having physiotherapy on my chest – this latter involved me lying tipped sideways over on a heap of cushions and my mum slapping on my chest to try and loosen the mucus in it so I could cough it up. Yes, it was as tiresome and disgusting as it sounds. When I got better enough to go back to school my mum would come into school at least once a day and do my physio in the medical room (I think it was). I don’t know how she managed this, as she worked a lot when my brother and I were school age. But she did. I found it boring and annoying and obviously it did nothing for what little street cred I had. No, actually, I didn’t have any to begin with so that probably only mattered in my head! But I was slow. I was the stereotypical ‘weakling’ kid – the one with no coordination whom no one wanted to pick for their team. I still look back in some dismay at the fact that the teachers actually let pupils pick sides for games – it was an utterly humiliating practice for anyone who wasn’t good at sports, or unpopular or, you know, me. I really hope they don’t do things like that anymore. 

In any case, all this being different does make one think there is something wrong with what one is. 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 CHDs, it doesn’t paint a very happy picture. 

In their study Cornett and Simms (2014) found that, for adults with CHD, “The desire to have a ‘normal’ life was profound”. There are some pretty heartbreaking quotations in their article, 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”.  I have to say, 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. Again, I realise this sounds dramatic; ridiculous even, but the feeling of alienation for people with any chronic illness or disability can be this severe. “…[T]he patient’s perception [is] that their world is at conflict with that of their healthy peers” (Cornett and Simms). 

“…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, The Body Silent

It wasn’t all bad. I was secretly glad of some of my differences. When it was very cold, I didn’t have to go outside at playtimes. This meant peace and quiet for me and no need to try and join in any boisterous games or spend the fifteen minutes avoiding projectiles – footballs: I hated them. And of course, not having to do “the run” was a bonus. “The run” was a PE lesson we had at secondary school (ages 11-14), during which we had to run around the nearby park and through a bit of town and over the hills and far away (when we got to the senior school (14-18 years)  that was on the outskirts of town. But these things, along with the way I looked, my ineptitude at physical activity, and my scars, and my time off school for hospital visits, and the fact that my mum had to come into school to give me physiotherapy, all made me not-normal, an alien, in the eyes of my peers. The teachers were, on the whole, kind and careful; but this didn’t always help me not to stand out, or at least feel like I did.

Apart from “the run”, I participated in everything else the PE teachers threw (not literally) at me, to the best of my (in)ability. The problem wasn’t just that I tired easily – in a way that was the least of my worries – at least it would have been more excusable. However, I also had/have terrible coordination, bad spatial awareness and a tendency to run away if a ball comes flying through the air anywhere in my vicinity. So PE was rather a write-off, until Year 11 when we could choose what we did and I spent many happy hours playing badminton or tennis with my best friend, H. Also, tennis. Don’t ever play tennis with H. Her tactic was to whack the ball as hard as possible. In theory, I probably won all the games I played with her because she hit out so many times, but we never really kept score.

Photo by Kevin Mueller on Unsplash

Cooking and baking as therapy

To be able to take ingredients and make them into something tasty and pleasurable for yourself and possibly also for other people is a great gift. And people do it all the time when cooking, and they don’t seem to even think about it. It makes me quite cross when people are not sufficiently grateful for/to the people who make the dinners; the chefs, the parents/carers, the canteen workers, the au pairs (do people still have these?) et al.

Anyway, yes, the creativity of baking. It’s one of those things, really, where the possibilities are endless. You can make something out of not very much and it could turn out to be the best thing you eat all week. The healing factor of this cannot be underestimated – it is indeed therapeutic; not only the creativity of it, but also the practical actions: sifting, kneading, rolling, pressing, dusting, scattering, stirring, mixing, creaming, whipping. Using your hands to touch, feel, measure, weigh, divide, rub, create.  Baking is an escape from the everyday – it is not necessary, but it is wanted, it is comfortable, and in the right circumstances the kitchen can be a safe and protected space. “…to fold myself into the comfortable cloud of mix-baste-and-boil”, as Fisher says in The Gastronomical Me.

Even ‘simple’ cooking can fulfil this function – if you are the cook, you are important, even if  those you feed don’t consciously recognise or acknowledge this. They need you, otherwise they’ll be living off tins of beans and burned toast. So, whether they like it or not, you are the ruler of that particular sphere of home (or wherever) life. And of course cooking and baking, like all other sciences,  are about control. You, the baker, are in control of the ingredients, you are the only one baking, you are measuring, adding, heating to exactly the right measurements –  you are the one in control of all these things, making beautiful (and hopefully tasty) order out of chaos. 

As for all humans, but perhaps even more so, control is very important for people with chronic illnesses, because so much of their lives is beyond their own control. Stuff happens to you if you are ill – other people make decisions for you, you are not free to write your own narrative, your person is colonised. Illness is “about learning to live with lost control”. As Arthur Frank says, disease is a loss of predictability, and causes further losses: failures of body, mind and spirit that are too many and varied to list. Failures in reaching ‘life goals’, too, – not just the ones we might set for ourselves, but also the ones set for us by society – the goals, that, if we don’t meet them, change the way people look at us.  Cooking and baking give me back some control over my life, even over people’s reactions to me – my self. The cakes I bake become my stand-ins – they are between me and the world – see and eat my cake and love me for it/through it.  Is that enough? I guess it’s not ideal.  And yes, baking is predictable, at least to some extent – if you always use the same oven..

(Gall)Stones in the road

Stones in the Road is an excellent album (and song) by Mary Chapin Carpenter, that I used to listen to over and over again. And I just made a bad pun out of it.

I’ve been on the hunt for new (to me) ways of baking recently, because I have gallstones, and have basically had to give up almost all fat – even ‘good fats’ like olive oil cause my gallbladder to flare up and hurt me if I eat them. It is, to be blunt, extremely annoying. (I would like to use a word other than ‘extremely’ but I don’t like to swear in public).

I discovered I had gallstones in March, just before lockdown started in the UK. It was about 10 pm, and I was sitting on the sofa minding my own business and doing some crochet. I started to feel a pain in my right side and back, and this got worse and worse quite quickly, and then I felt sick so I went into the bathroom and called my husband for help. By this time I thought I was having a heart attack. It was probably the worst pain I’ve ever had, not just because of the actual sensation of pain but because it was so anxiety inducing. My husband called 999, and they didn’t have an ambulance nearby so they send a fire crew – they are trained in CPR and have the right equipment. By the time they arrived the pain had lessened a bit and I was able to sit down on a kitchen chair in the middle of the living room. Then the ambulance came and took me to the hospital. I was there all night, waiting in A & E, where they did some blood tests and a doctor said it was gallstones. A few days later I went for a scan, which confirmed this. The doctor asked me I wanted to have my gallbladder removed, but when I said I have a congenital heart defect he understood why I didn’t want to. So now I’m just trying to manage it with diet, and the occasional painkiller.

The pain has never been as bad since…so far, but, as I said above, I definitely notice the pain if I happen to eat ‘too much’ fat for my gallbladder to handle. Pizza is one of the worst offenders, alas, but even more innocent-seeming things like peanut butter can cause the pain if I eat too much of it, and more than one square of chocolate a day is definitely not on. So, I have bought myself a couple of ‘low-fat’ cookbooks, and then adapted the recipes a bit so there is even less fat in the finished product. It might sound extreme, but the alternative is chronic pain for the rest of my life, so I’ll take the almost-no-fat flapjack anytime.

Almost-no-fat flapjack

Growing older with a congenital heart defect: a seminar

Last Saturday I and about 25 other people with congenital heart defects attended a half-day seminar about getting older with a congenital heart defect, run by the Somerville Foundation. It was held in the illustrious surroundings of South Kensington, at Imperial College, right near the museums. I hadn’t been to that area for years, and it wasn’t quite how I remember it – it was in fact much nicer and easier to navigate. Perhaps there have been improvements – it seemed a lot more pedestrianised, which was good, and I have now found the nearest bus stops – also right next to the Royal Albert Hall. But I digress.

Much needed coffee

The seminar itself didn’t include anything unexpected, although it was still useful – it’s always a good thing to be able to talk to people in the same sorts of situations to you, if nothing else. The main points were:

  • People with congenital heart defects are (obviously) still subject to all the ‘normal’ health problems older people can expect to encounter. I think this is rather unfair, but there we are.
  • We (people with CHDs) need to be mindful that we are also more likely to develop certain conditions as we get older (e.g. type 2 diabetes, kidney and liver problems) so we need to try to take steps to mitigate this (i.e. eat healthily and exercise as much as we can).
  • We really need to make sure we have at least a summary of our medical notes on our person at all times in case of emergency or other hospital/doctors visits. Also, we need to try as much as possible to encourage any non-CHD specialist medics to liaise with our CHD medics otherwise there is a risk that they might do more harm than good. I’ve been very fortunate (so far) in that most non-CHD medics I’ve had contact with have been really good at liaising with the Brompton Hospital (where I have my CHD treatment/clinic visits), especially during my pregnancy and after B’s birth. However, some people have not been so lucky. We talked about the idea of advocates, which I think is a great idea, particularly as we get older and less able to fend for ourselves. But I guess the question is, who would do this? It might be a role for the Somerville Foundation, but they are a very small charity so I’m not sure how feasible this would actually be.
  • It seems that most people in the room had had (or were having) some issues (to put it mildly) with NHS administration. This is obviously a worry as we will probably need to access NHS services more and more as we get older. NB: I love the NHS but there are clearly issues that could be resolved fairly easily (she says) with a bit of forethought and patient-focussed systems/processes.

After the seminar we went to the V&A for (a very late) lunch, which was expensive but delicious. It was probably worth the money to sit in such beautiful surroundings (but I can only say this because I’m working full time and a lot of people with CHDs are not able to do this).

Dining room – Victoria & Albert Museum
William Morris Window, V&A restaurant

Great expectations? How experience of chronic ill health affects what we expect

This post is about:

  1. how experience of chronic illness affects how and what people with chronic ill health expect of themselves and their experiences (particularly medical interventions)
  2. what expectations ‘healthy’ people have of how people with chronic ill health will experience medical interventions.

I tried to fit all that into the title but it was far too long! Clearly, this post is in no way scholarly or backed up by any kind of research. It’s just some thoughts prompted by a conversation I had with some colleagues at work the other day. Also, I should point out that when I talk about chronic ill health in this post I mean chronic ill health from childhood, because I think experiencing ill health in childhood carries particular connotations and ‘risk factors’.

The expectations of people with chronic ill health

Speaking personally and in relation to my own body, I basically expect stuff to go wrong, or at least be complicated in some way. My expectations/fears are that if I can have a complication from some illness I probably will, if a procedure can be made a bit more complex it will be (because my abnormal body demands it), if it’s not supposed to hurt it still will, if I’m having a blood test the nurse won’t be able to find the vein, my pregnancy will be complicated, etc.  – because it’s me – that’s what happens, that’s what my experience has been. In fact (or to my mind, which is not necessarily the same as fact but I think it is), this view is totally logical: people go with what they know – my past experiences show me what my future experiences will be like.

I think this idea of being abnormal/complicated/problematic influences my expectations about myself even away from the area of medical interventions. If you think you are abnormal (yes, yes, I know…), complicated and problematic you are (I imagine) not going to have much in the way of self-efficacy, and be more likely to have lower self-esteem [but my positive thinking friends might argue that this is self-fulfilling prophecy – haha!], verging into self-hatred. Actually, I’m not imagining it: I have been there. It’s not the same for everyone with chronic illness – plenty of people I know who live with long-term ill health don’t (as far as I know) suffer from this degree of negativity towards themselves, but you can see how easily it could happen.

Thinking about this led me down another track – maybe this is where the idea of the ‘ill person as hero‘ comes into its own as a kind of defence against this spiral into self-loathing. No one wants their loved one to think badly of themselves, so one way to attempt to discourage or prevent these kinds of thoughts could be to build them up, leading them to think of themselves not as problematic but as overcomers of problems – which is what heroes are. It makes a lot of sense to me. Even though (as previously discussed) I still have problems with this idea of (e.g.) ‘heart warriors’, I guess it’s better than the alternative of depression and self-hatred. But perhaps there is something in the middle ground – a realistic acceptance of ourselves as we are: not as problems or failures, or heroes or warriors; ‘just’ human beings.

I am not Wonder Woman. Alas. Picture by Philip Bond

‘Healthy’ people’s expectations of how people with chronic ill health will deal with medical interventions

In my experience and that of some of my CHD friends, healthy people tend to think that we must actually suffer less during medical interventions and find them less traumatic over time, because we ‘must be used to it by now’, having had lots of previous interventions. Well, here is the news: we don’t. I have met a lot of people with various lifelong illnesses and it is very rare for someone to say that they find medical interventions less traumatic over time. In fact, I think for most people it gets worse. I have certainly found this to be own experience; partly because as an adult I now understand more about the consequences of interventions going wrong, but also just because of basic stuff like I know X procedure is going to hurt /be generally unpleasant- there’s no two ways about it. Therefore I fear it not less, but more. Knowing about bad things doesn’t necessarily make them any better in terms of how traumatic they are (although having said that it does mean you can perhaps employ your own interventions (coping mechanisms)) if you have any and are able to.

As far as I can tell, this idea of people being better able to cope with bad experiences if they’ve previously had bad experiences seems to be exclusive to the area of long-term ill health and medical interventions. You wouldn’t say to a child who’s fallen over and broken its leg, ‘Oh, it’s OK because because you’ve done it before, don’t be a baby’, (or maybe you would if you’re a horrible person), but this is what people expect of children (and adults) with chronic conditions requiring medical interventions, even those not necessarily related to their conditions. Somehow, because your life revolves (or has previously revolved) around hospitals, needles, drips, catheters, tubes, people with masks on their faces, etc. you’re expected to deal with these again (possibly in a totally different context) and be OK with it. I have literally had a doctor say to me (as a 30-odd year-old woman) ‘don’t be a baby’, because I was freaking out about a blood test (that he was basically incapable of doing due to his own incompetence). Yes, I was 30-odd years old, but ‘hello, brain with your excellent fight or flight reflexes!’.  We know bad stuff is going to happen – you can’t fool us with your cheery colourful scrubs or your vampire lanyards (phlebotomists, this means you).

So where does this leave us? Well, firstly we (I) need to find that middle ground of liking ourselves as we are – not as extremes of humanity as problems (villains? That’s a whole other blog post!) or as heroes. Secondly, people who haven’t experienced life long ill health and/or repeated medical interventions need to stop assuming that people who have are going to deal with these things more easily than ‘healthy’ people. It would make everyone’s experiences better.  Thinking on this has improved over the years – there is now much more focus on how people’s mental health is affected by long-term physical health conditions (e.g. see Liza Morton‘s work with people with CHDs), which just wasn’t considered when I was a child (as least not in my experience).

Interestingly, a third thing that came out of the conversation with my colleagues was that I assumed that ‘healthy’ people would actually find medical interventions more traumatic than people with repeated experience of such things – so I am actually being a total hypocrite, if you think about it! 🙂

I went to the dentist today

I went to the dentist today to have my teeth scaled and polished (‘cleaned’) and then have a filling. It was not fun. There was a needle. I don’t like needles. There were loud high-pitched whirring noises. I don’t like loud high-pitched whirring noises. There were people standing over me with face masks on. You get the drift. I held the dental nurse’s hand. I gripped on to myself. I took deep slow breaths. I cried. I’m 39.

I have terrible teeth [in my terrible jaws – have I read The Gruffalo too many times?]. Not in terms of them being decayed (thank goodness), just in terms of their alignment, or rather lack of. They are very wonky – crooked, to go with my crooked back. It’s fun. (It’s not). It means I have to go to the dental hygienist to get them cleaned every six months, especially as, because I have heart condition, I have to be careful about infection, particularly in the mouth. I had endocartitis as a child and it was Not Good (as my daughter would say).

Gruffalo by Tim Spouge

My teeth are crooked because I never had a brace. I was offered one, but I declined, because I didn’t think (aged 14?) that I could cope with the repeated trips to the dentist and fiddling about with my teeth that having one would have entailed. Or perhaps it was a matter of (for once) having the choice to be left alone or not, and I took the being left alone option, which I think is understandable.

Of course I regret it now. I know my teeth are horrible and I’m very self-concious about them, to the point where I will avoid smiling properly in photos. When I meet people I think about them thinking about how awful my teeth are – of course they may not be thinking this, but how do I know? And think of how many dental appointments I could actually have avoided if I’d had a brace so they were easier to clean.

Alas for the follies of youth!

Chronic life?

Definition of chronic in English [from Oxford Dictionaries online]:


1(Of an illness) persisting for a long time or constantly recurring:chronic bronchitis*

I’ve been following Britt AKA @HurtBlogger on Twitter for a while now. She lives with debilitating conditions of various kinds (or unkinds) and, along with other bloggers/tweeters, uses the hashtag #ChronicLife to document the way these conditions affect her life. It has been slowly, very slowly (over 38 or so years) dawning on me that perhaps I too, live a “chronic life”.  Even now my life is pretty easy compared to Britt’s (I know it’s not a competition, I’m just saying) – it’s just the constant tiredness/near-exhaustion that’s getting to me at the moment, so things could be a lot worse. But it (=mainly my heart condition with an occasional side of migraine) is affecting my life in ways it hasn’t before – at least not on a long-term full-time (chronic) basis.

But now it is. I have to plan my energy use, which means I can’t always do things I’d like to do. Despite having a congenital heart defect, this is fairly new for me (which is one reason I keep writing about it, sorry about that). Whether the lack of energy is caused by my heart or ‘just’ the medication, the end result is the same – re-planning, rethinking, restriction. Just simple things like ‘do I have enough energy to go to take B to the library today?’ (yesterday the answer was ‘no’). It’s annoying. And, yes, I am whinging.

I’m going to see the cardiologist on Monday. I don’t think there’s much that can be done about the tiredness, especially if it’s a side effect – I can’t really stop taking the medicine! -but at least I can let them know about it and makes sure it’s not the heart itself. I don’t know what we will do if the meds aren’t working (or not working well enough).

Here endeth today’s complaining.

*It’s actually not that easy to define chronic conditions/illnesses etc.