Hi, my name is Kylie and my amazing cousin Mia has asked me
to write about my perspective of her battle with Lyme disease.
The first time I heard Lyme disease mentioned was on an
episode of the Simpsons. Miss Hoover
told her class that she had Lyme disease and she would be away for a
while. Lisa falls in love with the
substitute teacher, Mr Bergstrom and is heartbroken when it turns out that Miss
Hoover’s Lyme disease was psychosomatic and he leaves for his next substitute
assignment. Miss Hoover is made to look
like a hypochondriac, the plotline wraps up neatly in half an hour and everyone
is happy.
Fast forward a few years (OK, more than a few) and I heard
the term for a second time. This time though, it was in relation to someone I love.
My gorgeous cousin Mia, who had been suffering with a variety of symptoms for
years and no one had been able to tell her what was wrong. So I decided that, while The Simpsons is good
entertainment, I probably shouldn’t rely on it for my medical information and
did some research myself.
I am the oldest grandchild in my family and Mia is the
youngest, with 19 years in between us. I’ve always tried to look out for all my
cousins- there are nine of us in total – and, while they would probably call me
a pain in the backside at times, we are all pretty close. Which is why it hurts to watch Mia go through
what she is going through with Lyme. Lyme is a silent disease in many ways- Mia
doesn’t look sick to many people and gets some strange looks when she is out in
her wheelchair.
But to those of us who know her, it’s not invisible. We see
when she has lost more weight, we notice when she is physically exhausted and
can’t stand anymore and we watch her sit on the couch at family get togethers,
wanting to play with her young cousins but not having the energy to do so. And that’s the stuff she lets us see. I know
that she hides her really bad symptoms from us, those days where she has to
have help showering because she can’t lift her arms to wash her hair or can’t
leave the house because her joints ache so badly. I see the legacy of these symptoms in my
Aunt and Uncle, Mia’s parents, in the stress in their eyes when they look at
their daughter or the frustration they go through when yet another Doctor tells
them that the disease that is causing their daughter to suffer so much doesn’t
exist in Australia.
So
when I think of Lyme disease, my main feelings are anger and frustration.
Frustration because I can’t fix this. Frustration that I didn’t have an answer
for my eight year old son when he asked if there was a cure for Mia’s Lyme
disease and if he could just take it away for her. And frustration and anger that our Mia, our
beautiful, talented, funny, Mia can’t get her disease recognised. She deserves
everything this world can offer her and I wish I could give her that. I can’t,
but at the moment I’d settle for Lyme disease getting the recognition and
funding it deserves. I don’t think it’s
too much to ask- can you help me spread the word?
My incredibly strong and kind mother has lots of words of wisdom, for other carers I think her words will be helpful.
I find it difficult to get a message across when writing but here you go. Being a mum of a chronically ill child is very hard. Watching your child continue to be sick and not have support by the medical industry is so confusing, I have never been a big fan of doctors and hospitals (this experience has not helped) preferring to live a healthy life, in the hope of preventing rather than trying to cure. Unfortunately this does not prevent your child being bitten by a tick. We are lucky because we have been able to explore every available option when it has come to treatments, and we have tried everything. Frustratingly, 7 years down the track Mia is still unwell, sure we have had some progress but when you are coming from not being able to do much more than getting out of bed to get to the couch, the progress is not very exciting sometimes. I want what every mum wants, to see their child reach all their milestones when they are supposed to reach them, it breaks my heart to watch my 19 year old daughter need to come home at 7.30 at night because a small outing has wiped her out.
Lyme disease has taught me so much, mostly, not to expect people to understand, you just can't, it's really difficult to understand how incredibly crap it feels to not only have a chronically ill child but to have your government and the medical industry give you no support because...... Why? ......who knows?
But it has also taught me that my daughter is strong, determined, and has an amazing attitude and that because of those things she is going to get better.
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