Rhian's Story

Rhian was born in 1977 and lives alone in Cardiff






What happened to me

In 2008 I developed symptoms that the GP thought was flu.  I gradually lost my motor skills and a few days later I started to fit continuously.  I had a form of Encephalitis called MultiPhasic Demyelinating Encephalomyelitis (MDEM).  I was in hospital for 3 weeks initially and then back and fore for 4 months with more attacks of the virus.

Impact on the family

At the time my mother became my main carer.  I had been discharged with no support.  It took a year for any other support to be there. Her daughter had changed from being happy to being lost. Friends learnt that I would never be the same old Rhian that I had changed and had difficulties. Going to the local for a drink wasn’t something I could do.  My partner and I split a year later.  My partner couldn’t get their head around the fact that I struggled with the little things.  When I look back I can see they used to get frustrated and I think they only stayed in the relationship out of guilt.  The way they treated me had a major affect on how I saw myself as a person.  My friends and my mother got me through a lot.  My brother lacks understanding of the impact this has had on me much like my ex-partner.  If it wasn’t for my friends and mainly my mom, I wouldn’t be here today.

Impact on self

My personality has changed. I had to grieve over the fact that part of me was gone.  I lost my independence.  I miss the old me.  I have to plan everything.  Most upsetting is that one half of me doesn’t feel like the other side of me – left side normal – right side- pain.  The damage done to my brain has had a major effect on my daily life.  Sometimes I just want to turn back the clock.  Loss of what you consider the simplest functions has had such an impact on my life.


I have had to become a stronger person.  I have better insight into disability, even though I have had dyslexia all my life.  I now speak my mind (not sure if that is always a positive!)

How has Headway Cardiff helped me

They have helped me to accept myself and the changes.  They have helped me to come to terms with being disabled and my fellow brain injury survivors have inspired me so much.

What the future holds

Hopefully I will gain my BSc in Health and Social Care via the Open University.

I want to give back and help my fellow disabled friends and others and lastly, I want to make my parents proud!