My Journey To Accepting My Epilepsy Diagnosis

In 2019 I was diagnosed with epilepsy and my world as I knew it was forever changed. On my road to recovery I have journeyed through the five stages of grief which are denial, anger, bargaining, depression and acceptance. These stages don’t always come in this order. I grieved for what was life as I knew it.

For me first it was denial. I was absolutely positive that it couldn’t be epilepsy, it had to be something else. Even when it was explained to me in full detail of what was happening I was positive I was going to continue to live my life as I had and nothing was going to change. I was going to take my medication and life would return to normal.

Denial quickly turned into anger. I was angry at everything. Why had this happened to me? Why at this stage of my life? What could I have done differently? What can I blame for this? What will I do without my driver’s license?

I bargained, oh boy did I bargain with the universe! ” I promise I will follow every rule possible for the rest of my life if you can just take this away, I will take my medicine, I will take vitamins, minerals, supplements, I’ll do whatever I can do if you just make the seizures stop and take this diagnosis away from me and finally ok I will take the diagnosis if you can just control the seizures and give me my driver’s license back.”

While I was going through these stages I hadn’t even realized how deeply I was in the stage of depression. This stage came on silently and quickly. The thing with depression is you can be so far in and not realize what has happened. It became more and more clear when my denial, anger and bargaining hadn’t worked (who am I kidding, I was still angry) that I was sinking deeper and deeper.

One day I was watching a Ted Talk on YouTube about one man’s epilepsy experience. He said the key step to his recovery was acceptance. My first thought was what?? I will never accept this but the longer I listened I realized I was having my AHA moment on my journey. He spoke about how once he had accepted his diagnosis, he was able to take control of his life again. Epilepsy no longer controlled him. He was able to adjust his life and come to terms with what his “new normal” would be. I sat there for some time after that and really let that sink in…accept my diagnosis. It went against every fibre of my being because I wanted to fight. In my heart he made sense but I wasn’t ready yet. Time went by but I couldn’t get this gentleman’s talk out of my mind so I knew I had to watch it again and again until it really resonated with me. It was then that I realized it was time to go back and go through my steps of grief again but in a way that was allowing me to let go. To actually let go of what was and accept my new normal. Acceptance came easier when I had really processed and figured out along the way that accepting didn’t mean defeat, it meant arming my brain and my body with as much knowledge, nutrition, holistic healing and my medication so that it could be at its strongest.

Letting go is a struggle but an amazing process to go through. You really get to know yourself. Letting go happens often with epilepsy, just when you think you have accepted and let go and adjusted to your new life something else will creep up and you need to learn to let that go too.

Epilepsy is so much more than having a seizure. In the beginning it is the crippling fear of having to go out in public in case you have a seizure, it is the recovery time needed after a seizure which can last for a few hours to a few days or more. It is the loss of some types of independence, it is the memory loss, the confusion, the loss of some friends and the setbacks that happen along the way. Having to take medication and the side effects that come along with it.

What has been most healing is trying to adapt a life of gratitude, which may sound odd after an epilepsy diagnosis but when I am down it helps me remember all the amazing things I have in my life and some of the things that having epilepsy has taught me. I have an amazing support system in my family and friends, I have learned not to sweat the small stuff, I have learned to really get to know myself, to say no to things without guilt, to put my needs first (epilepsy doesn’t give you a choice) and I have learned to set healthy boundaries in all areas of my life.

Epilepsy is a lifelong journey and there is no cure. Some days I still find that I have slid backwards a little and may be spending time in an area of grief but the amazing part is I don’t stay long and I remember all that I have and how far I have come.

I would love to hear your comments or if you can relate. Telling our stories when we are ready is very cathartic and shows others they are not alone.

March is epilepsy awareness month in Canada!