Epilepsy Word Map Graphic

“I feel better about myself, knowing that I am not the only one who experiences issues because of epilepsy” – feedback from discussion

 

On Thursday 15th November we had an interesting chat about the ways in which people are affected by their epilepsy including,

  • Feelings of isolation from family and friends because of the feelings of “shame” at having epilepsy
  • Living with intense anxiety and low mood
  • How other people’s fears and worries can rob you of your own self confidence
  • The sense of loss of the “old me” from a diagnosis and possible loss of career, driving licence, self -worth, sense of independence
  • Finding a “new me”

Linda (Peer Mentor and Group 1 graduate) shared her own experiences, highlighting how much she has changed as a person since she joined the programme in November last year.

She explained how she has come to accept the “me” that she is now, and how important it has been for her to find this sense of self, through her experiences on Epilepsy Futures and beyond.

It seemed like the group really benefited from the open conversations that took place, realising just how many of their own darker feelings are shared by others, and learning how other people have coped with their own issues.

When we talked about how being part of Epilepsy Futures might help them better understand self management, they came up with points such as these

“Knowing what questions I should be asking/can ask my neurologist”

“Feeling confident in speaking to my medical team and in getting the best options for me”

“Knowing how to make better choices to improve my lifestyle (sleep, dealing with stress, being connected to others,etc)”

“Learning more about other ways in which my epilepsy might be manifesting itself, and trying to figure out what some of my triggers might be”

“How do I complain if I’m not happy with the care I am getting?”

“How can I work with the doctor to make a care plan that suits my needs?”

We have a session planned next Tuesday with one of our colleagues from the Epilepsy Connections Forth Valley Fieldwork Team.

This session is titled “Getting the best out of my health professionals”, focusing on how to work in partnership with medical staff.

I am sure this many other discussions over the next few months will help answer these questions.

 

Peter Dale