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.

13983048962_217057f2cf_z.jpg
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! 🙂

Advertisements

Wisdom tooth

I had my third wisdom tooth out yesterday. The local anaesthetic injections were the worst bit. I didn’t cry as much as when I had the filling in June. I kept the tooth, although now I’m not sure what to do with it.

2984123316_75a57e528c_o
Wisdom Teeth by Taryn on Flickr

All credit to the dentist who was very good – he was very calming and explained everything before he did it, both what he was going to do and why he was going to do it. This helped a lot. Also, it didn’t hurt once the injections had kicked in. There was noisy cutting, as he had to cut off the top of the tooth before he could take it out – it was in a position similar to the one in the illustration above – leaning on the tooth next to it. I didn’t like the noise (who does?) but it wasn’t for very long. I didn’t commit any violent acts* and I wasn’t rude to anyone, so that was a triumph of sorts. Now I am trying not to do anything to make the wound bleed more, although I suspect I have already not rested enough. It’s surprisingly tiring having one tooth out!

*I’m always reminded of this quotation when I go to the dentist:

Hermione Granger: “My parents are dentists. They tend to people’s teeth.

Horace Slughorn: “Fascinating. And is that considered a dangerous profession?

Hermione Granger: “No. Although, one boy, Robbie Fenwick, did bite my father once. He needed ten stitches.

 

Zine!

Last Sunday, I made my first contribution to a zine. I went to a zine-making workshop; part of a series of events connected to the Sick! exhibition – an exhibition about living with invisible illness created by…artists living with invisible illness. It was really fun and very therapeutic, and that was just the chat! I am not really arty (as in, I can’t draw), but zines don’t have to be about drawing, writing is good, and collage, and all sorts as long as you can print it on paper/card. I enjoyed creating my page for the zine but the best bit was meeting other people living with a wide variety of invisible illness (although anxiety and depression seemed to be a common theme, alas) and sharing our experiences. I felt less like an alien when I went out than when I went in.

It is ridiculous, really, because I read stuff about chronic and/or invisible illness all the time, I know lots of people (at least online) with congenital heart defects and others with anxiety and depression (more of them in real life, some of them the same people) but I still find myself feeling like I’m the only person going through such things. I guess it’s those ‘dark night of the soul’ moments (if only they were just moments); it’s very easy to feel alone when you’re in the slough. Since I went to the zine-making workshop I’ve tried to think of the people there who were such excellent examples of how to live with chronic illness and take inspiration from them to get through some difficult moments. It has helped.

Anyway, here are some pictures of zines and zine-creation:

IMG_20170709_095143
INTRA, where the action happens!
IMG_20170709_101847
A selection of zines for inspiration
IMG_20170709_112829
How to fold the paper to make a zine
IMG_20170709_120633
Pages from the finished ‘test’ zine
IMG_20170709_125207
My page for the zine

In a very small way, I did something I’ve been wanting to do for years – make some art out of my medical records (photocopy of an ECG as background). I hope the page is OK – I think I should have done the writing and the background as two separate pages and then the risograph is used to put the pages together (see picture with stick person in, above). But I expect Xtina can make it work, somehow, for she is a printing genius!

Thanks very much to Xtina, Zara and everyone at INTRA for a lovely, creative, and useful morning.

This list of words is not exhaustive

Word Art (1)

I made this graphic (using WordArt) because I wanted to see how many positive words I could think of when thinking about my heart defect. So I just made a random list of words that sprang to mind when thinking about it, put them in a heart-shaped word cloud and categorized them using colour. As you can probably tell, the black ones have negative connotations, the blue ones are (sort of) neutral and the red ones have more positive connotations – all according to my subjective viewpoint, of course.

Once I’d finished the word cloud I realised how childish it is: the use of the word ‘tablets’ instead of ‘medication’ (or even medicine); ‘teddy’, ‘pricking’ (this refers to my sternal wires pricking me inside my chest – it happened a lot in my teens/twenties; not so much since the old wires were removed when I had surgery in 2008). You might be wondering why ‘picnics’ is in there. This is because when I was a child we always went to Harefield Hospital for my annual check up in the school summer holidays, and we always took a packed lunch and ate it outside. The ‘birds’ come from that, too – I remember the sparrows used to come and peck at our sandwich crumbs. I guess the childishness is explained by the fact that a lot of my thoughts to do with my heart defect are also to do with my childhood.

I think it’s quite encouraging that I managed to list so many positive or at least neutral words. When I first made the cloud I thought it was overtly negative, but then I realised lots of the words in the list are simply things that are just there – they are merely part of the experience of having a heart defect; not bad, not particularly good either, just there (bedpans, tests, screens, wires (although wires are bad if they hurt you)). Some words are a bit ambiguous – e.g. ‘parents’. I made them blue even though it is not really the case that they are ‘just there’ (and I’ve just realised I forgot to add ‘guilt’ to my cloud), partly because it seems the most diplomatic thing to do. ‘London’ is there because it’s always been the background to the story of my heart. When I was in hospital in 2008 I drew a picture of the skyline I could see from my window (hence also ‘drawing’) and at night when I couldn’t sleep I pretended the shapes I could see were animals instead of cranes and tower blocks.

I put ‘waiting’ in black, because I’m impatient. I think the other black words are self-explanatory, although some things like catheters and stitches are not really bad in themselves (they are there to help us) they are not very pleasant to experience.

This list of words is not exhaustive.

The hearts of small children are delicate organs

“But the hearts of small children are delicate organs. A cruel beginning in this world can twist them into curious shapes. The heart of a hurt child can shrink so that forever afterward it is hard and pitted as the seed of a peach. Or again, the heart of such a child may fester and swell until it is a misery to carry within the body, easily chafed and hurt by the most ordinary things.”

― Carson McCullers, The Ballad of the Sad Café and Other Stories

Please don’t call me a hero

I’m re-blogging this post from last year because I found the post that inspired me to write it (I couldn’t think of it at the time for some reason): this post by Sarah at The Adventures of Ernie Bufflo: https://erniebufflo.com/2014/01/29/my-child-with-a-disability-is-not-my-hero/ – so please read this before you read mine! She is a great writer and expresses what I want to say (although from a different perspective) much better than I can!

The shape of my heart

This is a picture of a picture of me in our then garden when I was about four:

SAMSUNG CAMERA PICTURES

In case you didn’t know, I hate having my photo taken and I almost never wear make up. A few weeks ago I decided it would be a good idea to volunteer to have my picture taken for the Somerville Foundation’s second Scarred for Life exhibition. This involved having my photo taken and wearing make up…and having my hair cut (a bit) and straightened (which I actually like). I was nervous about the process of having my photo taken, but it wasn’t so bad. I didn’t really feel like ‘normal me’ because my hair looked so different, so I didn’t feel like I wanted to hide like I usually do when face to face with a camera. I did, however, find it more of an emotional experience than I expected. I had…

View original post 494 more words

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).

15993104457_055d9ba74a_z
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!