through the looking glass, across the Atlantic

i’m a twin. from the beginning we made an unlikely pair – him fair and me dark – mismatched kids who spent most of our first years kitted out in hand-knitted jumpers and shorts and pudding-bowl hair cuts. when we were five, we were both given a pair of red clogs, but stamped our different rhythms up the high street, refusing to be the same child. one day, an elderly woman stopped my mother, ‘oh, the twins – what lovely boys,’ she said, then went on her way. i twisted my heel in the pavement’s grit to grind away the simple affront of being taken for a boy. fraternal twins? don’t be daft. this was 1970, and, as mismatched as we were, she put shorts + short hair together and saw boys.

clichés about twins abound. how could i not grow towards and into the clichés too? we’re not joined at the hip, (cliché alert),  and yet when i look at him, i see myself – some aspect of me, looking back.

if you read the literature around functional abdominal pain, you will soon have a profile of a child – likely a girl – anxious, over-achiever, who (being a girl, note) is likely to catastrophise her pain or explain it in bizarre or emotional terms.  oh these resource-needy, attention-seeking girls, the literature worries.

i look at my daughter and think – is this her?

no. yes. no.

yes, anxious – but anxiety that has come as a result of the pain, not as its precursor.

it is interesting. functional abdominal pain has been described as a waste basket diagnosis. time and again, the literature points to a lack of understanding, the need for more research. i tell you what thrives in this vacuum – clichés.

maybe it’s because i write, or maybe because i’m a twin, but clichés – i can’t be doing with them.

***

quite by chance, and through this blog, i made contact with a woman in the US whose daughter has a similar diagnosis to my daughter’s. both have had abdominal pain since January (January!) that has severely affected their ability to function. schooling, hobbies, normal day-to-day activities such as going out and meeting friends – all disrupted or greatly curtailed.

in many ways, that is where the similarities ended and treatments diverged. in part, this is a reflection on two very different healthcare systems. our daughters have been prescribed different drugs. Citalopram, is used with good effect for children with FAP in the US, and being researched by the Nationwide Children’s Hospital, but is not licenced in the UK for this purpose. Medicines for Children returns no search results. both children are supported by psychotherapy – yet again approaches differ. one child is offered a tailored programme that uses biofeedback with breathing and visualisation exercises, the other child (mine) was offered a generic ‘pain kit’ which was woefully inadequate and has yet to begin any structured therapy. biofeedback will not be used.

today, our girls are going to connect on facetime and work through a visualisation exercise together. my daughter reckons she does not need it, but still wants to do this with her friend. she’s also not certain her pain has gone for good. they know, without having to explain, what the other is going through. it tells me that the child’s experience, their ability to work together as peers, and share and learn through this, is often overlooked as a key factor in helping recovery.

let’s see how it goes. i am quietly optimistic.

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