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…’
– 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.