child dressed a nurse to see what's wrong

What’s Wrong With You?

Please allow me to introduce myself…

My name is Jenni Williams and I’m 43 years old. I’m short sighted, -4.75 in the left eye and -5.00 in the right. I had my appendix out in December 1994. I’m on the contraceptive pill, Mercilon in case you’re interested. I get thrush once or twice a year. My last smear test was in January 2018, results normal.

Too much information

I know this is a slightly embarrassing way to make your acquaintance but my daughter is introduced by her personal medical history in hospital clinic letters and other pieces of official paperwork, so it seems only fair that I should experience what it feels like. And it feels very uncomfortable. I didn’t like writing that first paragraph and I really don’t like the fact that you now know those things about me. Firstly it’s personal and secondly it’s irrelevant to who I am as a person. Oddly enough I don’t feel defined by my lack of an appendix.

Eve swimming

Of course I know my daughter’s clinic letters have to list her medical conditions and this is not in any way a criticism of her consultants. They are skilled and dedicated doctors and warm and caring people who are always interested in how Eve is doing overall.  I am grateful every single day that we live in a country where this treatment is free at the point of need.

eve sat playing with toys not wrong

Short Sightedness

Nonetheless it niggles because I am reminded that this is how society often views Eve and children like her – as a list of medical problems. Someone to feel pity for or even someone who in some quarters is considered a burden or not as worthy of life as ‘normal’ people. Too much focus on someone’s medical conditions can obscure what really matters – that we are all unique individuals, regardless of our medical history.

Don’t get me wrong – my husband and I don’t ignore Eve’s complex medical needs. We’re fastidious about her medication and keeping her safe. One of her conditions is never far from our minds and she is never truly ‘alone’ – she sleeps in our room and for the few hours that she’s in bed before we are. We have an ear and an eye on the video monitor.

Yet all this aside I want Eve to be known first and foremost for her personality – her approach to life, her likes and dislikes, strengths and weaknesses, character traits and quirks.  I don’t want her to be seen as a list of medical disorders.

eve sat on the grass

 

The right approach

Thankfully we’re not the only ones who see her this way. For example at Eve’s amazing school the children are celebrated as individuals. Their diagnoses are used solely to keep them safe and tailor their education.

In addition Eve has recently come under the care of a new consultant geneticist – a specialist in cancer genetics – who will oversee one of Eve’s conditions that now needs to be regularly monitored. In a clinic letter primarily discussing the impact of the loss of a single gene, this consultant also referred to Eve’s role as an ambassador for an annual disability sports event, the Superhero Tri. How wonderful that a doctor who focuses on the human body at a sub-cellular level can also see the big picture.

eve swimming with leg in the air

A second opinion

Ultimately, whenever I read that list of conditions I want to shout to the world that that’s not Eve. So in the interests of redressing the balance, here’s her alternative diagnoses according to the specialist who knows her best – me.

  • Acute cuteness syndrome
  • Systemic happiness
  • Chronic determination
  • Congenitally stubborn
  • Developmentally advanced ‘bullshit radar’
  • Communicable sense of humour
  • Infectious cheeky grin
  • Clinical obsession with Fraggle Rock and Disney movies
  • Degenerative addiction to swimming – most severe episode lasted over three hours and resulted in a prolonged loss of consciousness (fell asleep in the pool)
  • Endemic Ambassador for the Superhero Tri Series
  • Malignant (for her parents) love of any plastic toy that lights up and plays annoying music
  • Pathological dependency on getting in to bed with Mummy in the middle of the night
  • Incurable love of Mummy’s spaghetti bolognaise
  • Febrile excitement at going to school
  • Relapse of febrile excitement when seeing Mummy again at the end of school
  • Epidemic levels of affection, often co-morbid with wanting to watch cartoons on YouTube with Daddy
  • Unresponsive when told not to open the kitchen cupboards

In summary, a beautiful little soul inside and out and the best company in the world.

eve opening kitchen door

Read more of Jenni’s Blogs

Please leave comments at the bottom of the page.

Jenni Williams

Jenni Williams likes dogs, craft beer, Radio 4 and nice people. She would like to be a non-struggling writer one day. Her dream car is a blue pick up truck.

8 thoughts on “What’s Wrong With You?

  1. I’m laughing and crying in equal measures, Jenni, this is genius and absolutely spot on. Eve was gifted to you and boy do you get how lucky you are. Keep on enjoying her and fighting the fight for everyone out there that doesn’t get it!!

  2. Absolutely loved reading this! Do you mind if I share it to the 3p Deletion Syndrome Awareness page?

  3. Just wanted to say Jenni’s writing is brilliant and exactly the way I feel too! Well done Jenni!

  4. Grinning from ear to ear. LOVE THIS! Thank you for giving me something to smile about in the early days of our own 3p- diagnosis.

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Aimee

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