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.

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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! 🙂

“…a vital expression of the organism…”

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The above is printed in the front of Migraine, by Oliver Sacks. I’m reading this book for the second time. The first time I read it I was in my late? teenage years (a long time ago), and I remember that I actually started having a migraine while I was reading it. The irony (or something). It is a most fascinating tome, mainly because migraines are fascinating things but also because Sacks writes well and accessibly. But I’m not really planning to write about migraines or even Migraine today. This is really just a little note about the above quotation. I had two thoughts about it when I read it the other day:

1.

Whoever…sees in illness a vital expression of the organism will no longer see it as an enemy…

Both thoughts have to do with my acceptance (or not) of my heart condition. I have seen my heart condition as my enemy, to be fought against. I have not seen it as a “vital expression of [my] organism. But…

2.

…the disease is the creation of the patient…

I don’t think Groddeck means that the patient is inventing the illness; I’m taking this to mean that the illness is ‘just’ a part of the person, in the same way that the person’s walk, speech, facial expressions, etc., are a part of her/him. My heart condition is  a part of me, so (a) in fighting against it I’ve been fighting against myself (very tiring) and (b) I think I have been seeing it as something separate from myself, like an external enemy that might go away if I try hard enough. But it’s not going to go away. [In this week’s counselling session I realised that I’ve been holding on to a fantasy that one day my heart defect would just go away! This probably sounds ridiculous but when I said it I realised it was true, and might go some way to explain the non-acceptance of it.] I need to accept my “creation” as me. I’m not sure I need to like it, but I need to find a way of seeing it in the same way that I see my [trying to think of something I like] handwriting; not as something external to me, but just part of my whole self/person.

Is this making any sense?