MS Awareness Week - My Diagnosis Day

 

I've been wanting to write a blog for the past couple of months now, but my motivation has seriously been lacking. My mental health hasn't been great this year so far, but I feel I'm in a better place than I was a couple of weeks ago for instance - so I count that as a win.

This week is MS Awareness Week, so I thought I'd contribute by writing a few blogs about my experiences with the disease.

This is an edited excerpt from my final degree project, which was a life writing piece spanning ten years of my life. The piece covered pre diagnosis, diagnosis, and the years that followed. I somehow managed to squeeze in ten years into 4,500 words. I missed a lot out (think about 4,000 words), but I'm proud of it, although there is a lot I would tweak.

So, here's my diagnosis day. Not the beginning of my MS journey, but the part of my story that made sense for me to start at. 

Thank you for reading :-)

Jo xx

If someone had said to me six years ago that I would have started working full time again, and that I had decided to go travelling in Australia for a year, I would not have thought it possible. My life had been turned upside down in an instant after my diagnosis, which was the crescendo after four years of various medical tests.

I’d questioned my sanity on many occasions in the lead up to this day, especially when a lazy GP had told me that my weird symptoms were all in my head. It turned out that he was strangely correct, however not in the sense he had intended.

Staring at the grimy window behind Dr Rashid, and tapping my hand on my right knee, I took a deep breath. I looked to my left at my parents holding each other’s hands. In front of me sat three medical professionals, a consultant neurologist, a nurse, and a physiologist, which to me meant that I was about to be delivered some bad news.

‘Miss Hayes,’ said Dr Rashid with trepidation. ‘Given your most recent symptoms, I can say with some certainty that you have Multiple Sclerosis.’

I could hear sobbing coming from somewhere to the left of me, although I couldn’t even muster the energy to move my head to look due to the shock.

I glanced in the direction of the nurse, who awkwardly slid a box of Kleenex in the direction of my Dad. My Mum squeezed his hand in a comforting gesture, while I dealt with the shock by myself, feeling as though the air had been sucked out from my lungs.

‘How long does she have?’ Asked my Dad tentatively.

Silence.

‘Um…I think there must be a misunderstanding,’ said Dr Rashid.

I sighed and turned to face my Dad.

‘It’s not fatal,’ I said, sounding like someone had said something to insult me.

Feeling somewhat irritated, I dealt with my diagnosis like you might deal with an embarrassing faux par at a dinner party, and brushed it aside.

‘So, what do we do next?’ I asked.

I have always been good at putting on a mask (figuratively and literally is apt these days), and I received a few surprised stares from the medical professionals in the room when I declared that I was going to head straight to work after the appointment. The news hadn’t quite sunk in at this point.

As I sat there while Dr Rashid rattled off different therapies, and their varying side effects, I couldn’t help but think that this was like a twisted sweet shop. On the one hand, the therapies may help me control my condition, which was the sweet part, and on the other hand, I could get flu like symptoms, heart palpitations or liver failure, which was the twisted part. There were a few options, and they all involved me injecting myself a few times per week. Feeling numb like someone had used local anaesthetic on my mind and emotions, I asked if I could have a think about my options and to let them know.

Feeling like a spectral being floating out of the room and down the hallway, I went to hug my parents, and it didn’t register that they were speaking to me. I attempted a weak smile, and I somehow drove to work.