Katie is 22 years old and will graduate from college this spring. She has also had psychogenic non-epileptic seizures for 4 years. She contacted me because she wants to be a voice and advocate for PNES, to help others realize they are not alone and that there is hope, and to make positive strides for this condition. So this month’s blog post is different than all the previous ones I have posted. It allows us to hear the voice of someone who actually has PNES; not a doctor who treats PNES. A very important shift in perspective. Welcome, Katie and thank you!
The first time I had a seizure, I felt like my body had betrayed me. I had spent 18 years carefully developing control of my body, only to have it stripped away in a single moment. I felt out of control, scared, and alone. Supportive, loving people surrounded me, but no answers. No one could explain what was happening and I discovered I could only go through so many doctors’ appointments that ended with shrugged shoulders and yet another referral before I would begin to lose heart. A doctor scribbling the diagnosis “pseudo-seizures” in my file, the look of panic and uncertainty when a friend saw me crumple to the floor for the first time – these were the moments that discouraged me.
I had my first seizure four years ago and I continue to have them today. Due to the makeup of my body and my mind, these events persist. It is a challenge living in a world that does not understand this diagnosis and it can be discouraging and disappointing; it can cause you to doubt your quality of life. I struggled with that question, and sometimes still do. Somewhere along the way, though, I made a decision. Seizures demand moments of my life, but I am going to demand the rest. They can have me in the moments when they force me down to the floor, but they cannot have my life. It has taken enormous time and energy, but I have learned to work with this condition. My life looks different than the lives of those around me, but it is one I fill with joy, faith and triumph whenever possible. It is not easy and there are many days when I long to give up. Days when my muscles ache and I am weary of explaining this condition. Yet, I continue to leave the house each day, and implore you to do the same, because PNES should not define us. It is a component of who we are, but it is not all we are. I may have PNES, but PNES cannot have me.
Katie,
I love your story! Keep up the wonderful attitude. I have these too, but mine are finally under control thanks to a great relationship with my therapist.
Hi Katie, I am coming up to 4 years with PNES which means seizures (now less prolongued and physical) and daily vocal tics. I have put my energies into being creative and am surprised at where this creativity has grown into something wonderful. I am a calmer person now who looks at what is important in life and what is trivial. No, I don’t like it and sometimes I would like my friends to spend 5 minutes feeling what it is like to make strange noises in public. They find it amusing and I guess it is sometimes, but also physically exhausting. I, like you try to take the best from the day – there is always something positive. Its hard, but this is my life, so it is a case of make the best and live it or – well there is no alternative in my book. Good to read your words.
Katie,
I can relate to your struggle with friends. At times I almost feel bad for them – I certainly would not know what to do if someone suddenly had a seizure in front of me. I’m sorry that you perhaps don’t receive the support from friends that you need. Keep up the positive attitude and remember that despite the awkwardness, there is another gift PNES gives us.
We can not pretend to be “typical” because our bodies give us away. Would I reveal my secret weaknesses if I had a choice? Probably not. But PNES has forced me to be open about my experience, and through that, accept that I’m not “normal”. None of us fit into the same mold, but others have the ability to hide, camouflage and forcibly shape themselves to fit the cookie cutter. They have the ability to hide their differences, but my body won’t let me pretend anymore. I’m forced to openly be myself, the good and the bad, and there is freedom in that.
What were your triggers or what happened when you had a seizure?
Shannon,
My triggers have changed over time. At this point in time, my seizures are triggered by high, general stress. It is hard to pinpoint a specific situation. My biggest discovery was that I have a threshold for stress. When life events push me over that threshold, I will have a seizure. Overtime, I have developed a sort of internal barometer of my stress and can gauge when I may be getting close to a seizure.
In the beginning, a counselor was helpful in identifying what particular situations seemed stressful to me. Everyone’s version of what is stressful, however, varies. For one person it could be heights, for another, it could be confrontation. By utilizing exposure therapy, we were able to confront many of my original, triggering fears head on and work past them.