While recently doing my volunteer work, I was talking to a newly diagnosed patient. We were talking about the acceptance of having something that can’t be cured, having facial pain and chronic illness as a whole and how it is not fair. Especially for those of us that have already been through a lot in life. I agreed.
Some people may criticize someone for feeling that something is not fair. I do not think it should be criticized. I feel that it is one of the most human experiences, to feel that something like a disease, or health struggle is not fair. You know why, because it is not fair. Especially if you have been through a hell of a lot already.
I shared I understood the feeling well. I didn’t dive into my own reasons where I have also felt the same way, and had the very same thought. This conversation wasn’t about me, it was about holding space for this human who was wrestling with the tremendous fact that they have come down with a rare and incredibly painful condition. A condition that has changed life as they know it.
The young patient asked me how did I overcome this thought, of "it's not fair". I made it clear that I didn’t overcome it, but it did get easier, especially with time, I shared I found purpose in my pain. And then an incredibly tough questioned was prompted to me, what was my purpose? I choked up inside a bit as I shared that I had gone undiagnosed for nearly ten years. I was incredibly alone during that time. And very afraid because I did not know what was wrong with my face. Once I found answers and found others who understood, that also had my rare condition of Trigeminal Neuralgia, I found that I was not alone. Knowing that was a huge game changer for me. My purpose is to give back by volunteering and giving back that message that helped me beyond words, that they too, are not alone. And they can get through this.
Hearing that question of what was my purpose in having such a terrible condition(s), really caused introspection for me the following day.
I have been through a hell of a lot. A lot of those of us who come down with a chronic illness have already rode the rough seas of life. The last thing we need is a condition that impacts our life the way rare facial pain does. For me, for goodness sake I was born and raised inside a cult. The trauma that I have experienced is tremendous. Leaving at twenty-one was very traumatic in itself. Was it not enough to have survived a cult? Why did I too have to go through something as painful as TN? And why did I have to develop my rare facial pain within the cult?
I was bullied within the cult due to having Trigeminal Neuralgia (although undiagnosed at the time), I was told I was lying, that I couldn’t possibly be in that much pain. That I was being dramatic. I have hurtful memories from the onset of my pain.
Trauma of developing my condition is three fold for me. The fact of developing such a painful condition, being not believed, and having the deep rooted belief planted by the cult that I should just toughen up and not have medical help.
The doubts that were placed from other’s words had a huge impact of me not seeking help sooner. And fear. So much fear.
The experiences of being forced to sing through episodes of facial pain, to the point that I had sweated through my clothes is still raw on some days. Or the memory of being told I looked like a monster as my face would contort through an episode. I was told to stop making those faces as I was embarrassing myself and embarrassing those around me. That one hurts.
These
memories sting but they also anger me. Anger me for that little seventeen girl
that was so scared and tried her best to hide the attacks. I should never had
to feel that way. I should have never had to hide my pain. I should’ve been
able to go through my attacks with no judgment. Yes, I feel anger on behalf of
myself.
Thankfully, leaving the cult, I only have loving and supporting people around me now. No bullies. Only believers in me. Believers that my pain, was and is indeed real.
So yes, I do believe that it is not fair for anyone to come down with facial pain. Especially those who have already been through so much already. It’s not fair.
It's. Not. Fair.
Finding purpose in the pain…I am still finding purpose in my facial pain. Some days I feel it to my core, that there is indeed a purpose. Other days, I just feel like bad shit happens. And that bad shit, was me developing TN. All of those emotions are valid. And that is me being real.
What I do know is my purpose in life is to live. To live beautifully. To live beautifully in spite of any type of pain. And I'm doing just that.
