diagnosis

the story begins where it begins and so it begins here, nearly three months after my eleven-year old daughter became unwell.

unwell? – here i am, one sentence in, and already tripped up by a word i thought i knew and understood. certainly, we thought she was unwell when we drove her to hospital with suspected appendicitis. then her blood and urine tests came back clear, an ultrasound scan was also okay and she was diagnosed with functional abdominal pain. my daughter was discharged into the care of a clinical psychologist who asked her if she is happy at school. yes, happy at school. no follow-up appointment given. paracetamol for pain relief. home again. cope.

unwell, poorly – these are words i have to learn to strike out, because she is neither.

she is in pain – so much pain that she has been unable to return to school since January. she can’t stand up unaided, nor dress herself, nor sleep without crying out – oddly, these things do not mean she is unwell. that she is in pain, a great deal of pain and declining, seems secondary.

we must be reassured by the diagnosis of functional abdominal pain. i am told that parents who are not reassured make things worse. questioning the diagnosis makes worse things worse.

this diagnosis turns a very great deal of what i had thought to be true about care and caring on its head.

Advertisements

2 Comments on “diagnosis”

  1. Toni says:

    “we must be reassured by the diagnosis of functional abdominal pain. i am told that parents who are not reassured make things worse. questioning the diagnosis makes worse things worse.” Who told you this? I know very little about living with pain, but I DO know that you should question EVERYTHING! Wishing you lots of luck x

  2. the literature surrounding functional abdominal pain is full of references to anxious parents who find the diagnosis of functional abdominal pain difficult to accept. on one level, these have become clichéd, i think. as soon as you question, you are placed in that category too (that has been our experience). the diagnosis is a process of exclusion, and that raises the question, ‘what if?’. What if the tests have missed something? What if the ultrasound scan didn’t image her bowel properly? What if this is neurological, or musculoskeletal? the appointments are short, time-pressured, the questions we had were stone-walled. from the consultant’s point of view, additional tests are potentially invasive and expensive, and frequently don’t reveal anything further. they’ve been down the path countless times before, patient and parent likely haven’t. at the end of the day, we accept the fact that there is no underlying organic disease. great. relief. but we are reassured? no, we’re not. how can we be, when our daughter is debilitated by pain.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s