gastrointestinal

Diagnosis Part One.

I’m not sure about you, but I have dreamt of this day for a long time now. The moment when the doctor sits you down, rests one hand on your leg and puts his sympathetic facial expression on and says, ‘We finally have an answer. You have…’

They have an action plan for you, maybe some medication to ease the symptoms and you are opened to a community of fellow sufferers.
In the back of my mind, I never thought this day would come. That I would rott here for the rest of my life with these symptoms, wasting money on specialists and medication and never be myself again.

Today, I received a call from one of my Gastroenterologists. I can tell you that I was not expecting a call this early, or for her to begin our conversation with ‘we finally have an answer. You have… a severe case of…’

Gastroparesis.

(Gastroparesis:
– partial stomach paralysis when digesting food.
– longterm chronic condition with no cure
– symptoms usually include: chronic nausea, loss of appetite, bloating, stomach pain, body aches, heartburn.
– Leads to rapid weight loss and malnutrition, depression, anxiety and a range of other great symptoms
– usually found in people with Diabetes, Autonomic Neuropathy, Neurological Conditions and damage to the vagus nerve)

I said nothing.
‘It’s unfortunately rare for someone your age to get this, and this severe…’
My heart sunk.
‘Young people just don’t get this out of the blue… We have spoken about it and think your body has a virus that has unfortunately caused it… It could be causing your other symptoms. The drug we prescribe for sufferers is Motilium but we have already trialled this on you and it showed no success…’
I tuned out at this point.
A rare condition – of course.
You keep coming back to this mystery ‘virus’ that nobody can seem to locate, or name.
It doesn’t explain the dizziness, or maybe it does.
There is no cure.
You have already tried the prescribed drugs for management with no success.

You have already changed your diet.
We are still stuck in limbo.

I cried – pretty hard.
She assured me that we would keep trying.
She encouraged me to speak to my Doctor tonight, and that this wasn’t an overall “bad result”. In order to properly treat it, we must find try to find the underlying cause.
I unfortunately have to wait a few weeks to see my Gastroenterologist, because he is booked out.
We wanted an answer, and now we have… half of one.
Not even half… A quarter, maybe.

The rest of the conversation was a blur.
I thought I would be happier with a name, but I’m quite the opposite.
You search for so long, you lose everything you had; all to receive a partial diagnosis of something rare that is yet to be helped/cured medically?
I don’t know what to do, I don’t know what to say.
I have so many questions.
Am I happy that it has a name?
Sad that it is rare and hard to manage (in my case)?
Relieved that I am not crazy?
Upset that they still think there is an Invisible Virus behind it?
Where do I go from here? Neurologist? New doctor? New specialist?
What treatments do I take/trial?
How do I improve?
Will I ever eat normally again?
Will I ever put on weight, or will it keep decreasing?
How do I stop the nausea, the unbearable pain?
What the hell is making me so dizzy?
How on earth did I get this?
I am twenty-two.
How should I really feel?

The uncertainty, the loneliness, the disappointment.
Today feels like the beginning,  all over again.

You : your worst critic.

If dealing with the symptoms of Chronic Illness wasn’t enough, we also have to deal with the physical changes in our bodies, and having to face them mentally.
With detiorated health and immunity, comes physical changes that we have no control over. For example, I have lost weight at a ridiculously fast rate so I’m currently all skin and bones, my hair is falling out in clumps, my skin has turned to sandpaper and all of the colour has drawn from my face and turned me into a ghost. I look in the mirror and see someone who is sick, but I honestly cannot see the change in my weight. Others, can and they aren’t afraid to point out that I have a ‘problem’. They aren’t afraid to say,
‘wow you look shocking today’
‘Have you seen your um… face?’
‘What is happening with your hair?!’
‘You’ve lost SO MUCH WEIGHT’

I know that people aren’t doing this intentionally. They are stating facts, and probably don’t really know what else to say. So, um, maybe just don’t say anything at all?
Because yes, it bothers me, and I have no control over it.

If you read my post from earlier on in the week – Parents in the Shadow of Illness – you would have read that I was sent to an Adolescent Clinic in my earlier years. Sufferers of Anorexia, Bulimia and Body Dysmorphia were sent to this clinic too, so I was exposed (at a very young age) to this disease upclose and personal.
I didn’t know exactly how each of these teenagers felt, but what I understood from my time there was that they looked in the mirror and saw a completely different image to what was actually reflecting them.
I saw them hide behind their oversized jumpers and baggy tracksuit pants, and then further behind a trench-coat, because they weren’t happy with themselves.

I, myself, had been diagnosed with ‘Borderline Anorexia’. I remember asking myself, what the hell is the difference between borderline and straight out anorexic? We’re all underweight.
Why further break us down into smaller stereotyped categories?
Someone then told me that my illness was causing me to lose weight, and these teenagers were ‘doing it to themselves’.
No. It is not something that you ‘do to yourself’.
It’s a mental illness, or some people like me had no control over it as it was an alternate issue causing the weight-loss. It didn’t matter because it led to the same thing in the end; being underweight, unhealthy and judged.

When it comes to Body Image in general, why is it that we always believe our worst reviews? We can never accept a compliment, and when someone has the nerve to criticise our appearance, we let that cloud our mind and eat away at our thoughts.
There is always something, with EVERYONE, regardless of gender or social status.

Why do we become obsessed with wanting to be like someone else? As skinny as the celebrities, as tall as the models on runways, as attractive as that guy/girl you just saw on the train? (and here’s another thing, don’t gender discriminate. Guys suffer too). You’re looking at one girl, wishing you had her waist. She’s looking at another girl, wishing she had her breasts. That girl is looking at a guy, wishing she had his hair. And that guy is looking at another guy, wishing he had his body. It’s an endless cycle.

Isn’t there something beautiful in being DIFFERENT?
Imagine a world where we all looked exactly the same – that there was a median for men and women. Yes, there would be nothing to compare ourselves to, and no individuality! We would all blend in and there is no fun in that, is there?

There’s always something to complain about.
We wish our teeth were brighter.
We wish our thighs were skinnier.
We wish we had less spots.
We wish we were taller, shorter.
We wish we were curvier.
We want smaller breasts.
We want larger breasts.
We want less hair, more hair.
We want to be darker.
We want ‘natural’ skin, yet we use more makeup.
We want to look ‘beautiful’. What is beautiful, really?

I think that the true definition of ‘beautiful’ is being able to completely accept yourself with all of your flaws and imperfections.
To be able to look in the mirror, and PAST all of the negativity, and be proud of who we are, where we come from.
Sure, it’s great if you want to work on yourself and create a better you, but don’t interpret that as losing yourself in creating someone else.

As I said above, this illness has made my own personal view of my body and beauty, pretty harsh. Sure, I have the occasional day once every few months where I have a family event, slap on some make up and try to look ‘pretty’, but that’s rare and it doesn’t mean that I feel good on the inside.
I still cry every day because I don’t look the same as I used to. I cry because I feel unattractive. I cry because I can’t fit into my favourite clothes anymore. I cry because my body is working against me.

I am like you, my worst critic.

So here I am, flaws and all, sharing with you that it is PERFECTLY OKAY to not be someone else’s definition of perfect.
That we are beautiful with our illness, and without.
Bad Day vs. Not so Bad Day
We need to stop hating ourselves, and start loving ourselves.
You, are not alone X