On Valentines Day we hosted an Epilepsy Futures session facilitated by Emma and Erin, who deliver the Write to Recovery programme . The website will tell you more, and you can read (and contribute your own) recovery stories there.
In their own words, they say that
The aim of this website is to empower anyone who has ever experienced some sort of distress, emotional difficulty or mental ill-health to experience recovery by creating and taking control of their own story. By this, we mean thinking about and defining who they are for themselves.
Many people spend time being assessed and assisted by mental health professionals and social services. Naturally, the conversations are often focused on the negative effects of distress, emotional difficulties and mental ill-health. For some people this might include problems and difficulties like drug or alcohol problems, unemployment, suicidal thoughts, traumatic experiences etc.
As a result of repeating these conversations over time, the problems and difficulties begin to define who the person is.
While these facts are true, they are not the whole story – or the whole person. The fact is that many people have had to face severe hardships – yet they’ve survived. So it’s clear they have exceptional resilience and strength. But as long as they stay focused on the negative effects of their experiences, it’s unlikely they’ll see these positive qualities. And that can hinder recovery.
Creating your story puts you at the centre of your story – in other words you become the hero. You don’t have to be defined by the terms and phrases you hear. You can take a much wider viewpoint.
When you write your story, you can begin to look back on your experiences over time and to reflect on your journey of recovery, with all its ups and downs.
The holistic, person centred ethos of the project perfectly reflects what the intended purpose of Epilepsy Futures aims to be as a programme, helping people living with epilepsy to rediscover the person inside them.
The session on 14th focused on “surviving” and after introductions and a chat about how writing your own story can help you reclaim your identity, we talked about the things that have helped us to get through bleak, hard times.
- Other people in our lives that matter to us and keep us focused & grounded
- The strength we draw from important people in our lives believing in us, even when we can’t believe in ourselves
- The importance of faith, philosophy, world views
- Feeling a sense of gratitude for what we have and how we have survived
- Reminding ourselves that we matter and giving ourselves self care
Participants shared moving stories of what they had been through on their personal journeys.
Sometimes this was related to their epilepsy and what has happened to them, for example
- Other people not believing me when I said there was something wrong with me, thinking I was looking for attention
- People not understanding I have epilepsy and misunderstanding episodes of of post-ictal aggression and labelling me wrongly, leaving me scared to go anywhere
- The impact of a serious brain tumour and getting through the treatment
- The dark days of depression, anxiety and low self-esteem that life with epilepsy can cause
This rich conversation helped everyone to spend a little time writing down their own thoughts and words, and many people shared this in the supportive space of the session.
It made for a very moving session, and those who were present felt that it was a very useful and helpful way to deal with personal issues, and should be a part of the Epilepsy Futures programme.
Their feedback included
- “I liked all it honestly. Talking about myself and sharing things I’ve not shared with others before”
- “I managed to get a lot off of my chest”
- “Listening to other peoples stories and experiences”
- “It’s OK to seek help and to share my story”
While we can’t include a wider programme in this current group, we have already committed to include five weeks as part of Epilepsy Futures Group 4 during the summer months, with the hope of then doing facilitator training so that we can use the approach ourselves.