Dealing with grief after my MS diagnosis

Fri 25 November 2022

Multiple Sclerosis - two words that changed my life in one second.

Grief is typically conceptualised as a reaction to death, though it can occur anytime
Elisabeth Kübler-Ross, ‘On Death and Dying’

I wholeheartedly get this quote. I’ve never felt so confused about my own life. Something tells me if you’re reading this you may understand too. It’s taken me two solid years to understand what’s going on.

I remember getting my diagnosis and nodding, agreeing and walking out of the hospital thinking: ‘yep, ok cool, speak to you soon.’ I walked out, called my cousin and continued with life as I knew it.

I went to the gym as normal, work as normal and partied as normal.

On reflection, that sounds like denial, don’t you think?

Research and relapses

I learnt about relapses quite quickly after my diagnosis. Damn that annoying thing inflicting itself on my day-to-day. It felt like someone constantly flicking my nose saying: ‘I’m here, I’m here’.

I started the cycle of time off work, going to hospital, waiting hours in A and E. It felt repetitive. I had a nine-hour wait once.

Finally, anger set in.

I screamed, I cried, I broke down and shouted. I was so angry. You know that feeling that starts in your gut. Like, someone: ‘help me’.

We breathe, we move.

I researched day and night. I listened to testimonies across the world about the natural healing of MS, misdiagnosis and more. Did you research or am I the only one?

I remember looking in the mirror thinking and saying: ‘I will limit trigger foods, I will stop stressing, I will even cut down on the gym. I will take the damn medication. Just please, I beg, stop, just stop’.

I sit here writing this in 2022 and now know the meaning of real bargaining.

The reality of living with a chronic illness

No one can prepare you for the day-to-day life of what to expect with a chronic illness. That feeling of aloneness, it’s painful. It’s like having that constant lump in your throat and the feeling you’re going to break at any moment. Having silent thoughts about what will happen...

The fake smiles and: ‘I’m ok, thank you’, is what I realised depression looked like. It creeps up in the most subtle and underestimated way. I fell into a lot of silent moments. I’d be lying if I said I didn’t still have them.

The world is such a beautiful place. To lose my vision and not be able to see it puts things into perspective. It builds a strength you didn’t know you had. I started saying: ‘stop fighting, you’re hurting yourself. Stop fighting, you’re killing yourself. Stop fighting and learn. Study and make sense of who you are now’.

This isn't how my story ends – it's how it begins.

Acceptance.

This blog is dedicated to my auntie, Helen Sealise.

She died unexpectedly in July 2022 and she too was an MS warrior. She was my go-to person and helped me so much when I accepted my diagnosis.