“(It has) helped me realise that there are things that I can do that can have an impact on my health, and that it’s not just about “taking/not taking the tablets”

On Friday 29th March some of the peer mentors got together to have a chat about what we continue to learn about self management and epilepsy.

These mentors have been around since group one and group 2, so have had many months “post programme” to try to help motivate and guide new participants, as well as to put into practice all the knowledge and skills that they have gained.

Here are some of their thoughts about how self -management is helping them and other participants, and the remaining challenges they have to live with…

How the self-management programme has helped

  • Boosted mental well being – less depression and anxiety, trust others more and feel that I am worthy of my own care
  • Been a starting point in understanding and accepting epilepsy, dealing with the internalised sense of shame. Can talk to others in my family/wider circle about my epilepsy without being embarrassed, and can better accept my limitations
  • Helped me realise that there are things that I can do that can have an impact on my health, and that it’s not just about “taking/not taking the tablets”
  • It has given a focus, purpose, sense of routine for all participants – a place to be and belong
  • Given a social circle and people to speak to how understand the issues epilepsy brings
  • Learnt many new skills and information, which help me understand my epilepsy and myself
  • Mentoring others has helped reinforce the learning, as I’ve had to “live” what was learned in helping others.

Remaining challenges

  • What can I do when my time with Epilepsy Futures ends? How can I continue to raise awareness of what epilepsy is like to live with?
  • The seizures don’t just stop! Need to remember all the skills and tools when there is an upturn in seizure activity and not blame myself for “failing”
  • Dealing with societal attitudes and stigma about our epilepsy. For example, how do I keep myself positive if I try to reenter the labour market, and get rejected because of my epilepsy.
  • How do I deal with rejection by possible partners if I decided to date again?
  • Living with the ongoing memory issues and continuing to use tips to remember practical things like appointments, remembering your relevant experiences in a job interview setting, navigating social situations when you don’t remember details of other people’s lives.
  • Dealing with the medical world and the impact of medication side effects or changes in regimes
  • Feeling penalised by the Department of Work and Pensions, who don’t understand how epilepsy affects people, when they constantly review your award – this causes a lot of anxiety and financial insecurity

    Peter Dale
    Epilepsy Futures Coordinator