Why I Need Others to Be Calm During My Autonomic Dysreflexia 'Storms'

A few months ago, I was diagnosed with autonomic dysreflexia or “autonomic storms.” During a “storm,” my sympathetic and parasympathetic nervous systems cannot regulate each other, my body freaks out and normal physiological responses spiral out of control. My heart rate exponentially increases, my body temperature rises, I sweat profusely and get disoriented. The events of the world seem to slow down around me and become a blur, since all I can focus on is the internal battle happening inside of my body.

To further complicate things, since I do not have a spinal cord injury, doctors do not know why I experience “storming” and there is no treatment for it. The best explanation of why I experience “storming” is that it is the result of disease progression and the fact I am in pain all the time. Therefore, when I experience any added stress, such as increased levels of pain or immense changes in the environment like differences in lighting or temperature, my body does not always know how to regulate itself anymore.

 

When I am having a “storm,” I feel so helpless and out of control. There is nothing that can be done to make the “storm” stops or to make me feel better. I just have to “let the storm pass” while my mind is racing at what feels like 100 kilometers per hour. I try to tell myself that everything will be OK in 15-30 minutes (because it always is in the end), but when I am caught in the middle of a “storm” I get really scared and anxious.

Thoughts and questions flood through my head. “What if I do not make it through this storm?” “What if my pain gets worse and storming every day is going to be my new reality?” “Is having a storm going to be how I die?” I tell myself to breathe in. Breathe out. To think happy thoughts.

Once the “storm” is over, I feel exhausted, drained and emotional because my body just fought a battle. However, when I tell people about my “storms,” they occasionally panic, worry and freak out. Do not get me wrong, I understand it comes out of a place of care and concern. When you panic though, I feel the need to hide from you when I am “storming” because I am scared and terrified myself, too. When you worry, I feel guilty because I want to protect you from the “scariness” of storms, but I cannot. When you freak out, I desperately want to tell you I am OK, but my body does not let me do that. Therefore, it is a never-ending cycle that causes me to feel more embarrassed, anxious, uncomfortable and upset.

As “storming” is a relatively new occurrence for me, I am still trying to process what can be done to make things better. By remaining calm and composed, you make my storms seem less scary for me. By telling me I am OK, you are reminding me I will get through this. By just sitting here in silence with me, although it may seem like you are not doing much, you are communicating that you will be here and will not leave me.

I know remaining calm is not always easy for you, especially when you care about me so much and it hurts to see me in so much pain. However, when you do not seem scared or freaked out, I do not have to worry about reassuring you I am OK. I can just focus on taking care of myself in whatever may be the best way possible. I can feel less guilty for being vulnerable with you and be less ashamed of the body I cannot control. I can recover from a “storm” faster and forget about the terrifying parts of my disease because you can help me get back to the things I enjoy the most.

Thank you for being the “calm after the storm” and supporting me even when life feels like it is getting out of control.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via SIphotography.