SUDEP Action

Making every epilepsy death count
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Finding the light – my experience of the SUDEP Action Counselling Service

When I sought counselling from SUDEP Action I was feeling completely lost. I had taken some time off from my job and it had perhaps given me too much time to think about the loss of my beautiful little sister.  I felt as if I was watching someone else living and ruining my life. My embodied self was getting angry about things I didn’t care about, anxious about menial tasks, and upset by the tiniest things going wrong. My abstracted self was looking on, saddened by what I saw and realising I had pressed the self-destruct button. 

I had never considered SUDEP Action until my mother suggested it, and to be honest I was doubtful about reaching out to them for help. Not because I didn’t believe in counselling but because I had my reservations about telephone counselling.  I think I also felt guilty about taking from a charity I had done nothing for.

Contacting SUDEP Action turned out to be the best decision I have made so far in my grieving process. I spoke to Tracy, the kindliest and most brilliant counsellor I could have hoped for. When I first started I believed telephone counselling might be a ‘lesser’ service. I think my reservations came from the difficulty I found in my job about building meaningful relationships over the phone. I couldn’t have been more delighted to be wrong. 

Tracy made me feel comfortable almost instantly. Some people may find counselling uncomfortable at the start, and why wouldn’t it be? You’re essentially telling your deepest, and perhaps darkest, thoughts to a complete stranger. But Tracy’s kind and warm nature meant I was instantly receptive to her and felt, after a few sessions, that I could trust her with anything.  

I found rushing to the doctor’s for my NHS counselling quite stressful. The luxury of waking up and making a cup of tea and talking to Tracy in my pyjamas is impossible to beat. It makes sense, right? Everyone feels more comfortable in their own home, to start counselling in a relaxed frame of mind makes the biggest difference to what you can get out of it. 

Tracy doesn’t give you the answers; she helps you find them for yourself. I was struggling with people telling me that my grief would dissipate with time. It annoyed me because time had passed and it wasn’t feeling any easier. Tracy sent me an article on a perception of grief which has really helped me conceptualise grief in a way that is helpful for me and gives me peace of mind.

She would give me ‘golden nuggets’. I LOVED these. They really helped me think about the way I considered death and grief and helped me reconcile my difficulties. For example, I struggled with the concept of heaven. I don’t believe in it, and I didn’t want to think that the death of my sister was the end of my sister. Tracy said to me “energy is never created nor destroyed” and that is something I will never forget. I found solace in being able to think of my sister’s energy still being here with us, even though she isn’t herself. 

Through the counselling I would say I went on an emotional journey and I discovered a lot about myself that I didn’t really know. I am eternally grateful that even when I was going through something so significant Tracy did not abandon me, especially when I needed to talk the most.

It made me realise how personal the SUDEP Action telephone counselling service is, how much the counsellors genuinely care and that is something really unique and of incredible value. 

I would recommend the service to anyone whole-heartedly. It has had a genuinely positive impact on my life and I feel like I am in a much better position to tackle my life going forward than I was before.