'What Is Happening to My Body?': Understanding Functional Neurological Disorder
January 4, 2016 was a day I will never forget. This is saying a lot for someone who has already been through some pretty drastic treatments for two existing chronic illnesses. I had already learned to live with a mental health condition and survived ovarian cancer. I thought that besides the chronic pain and side effects from chemo, I was off the hook for a little while. I was wrong.
That morning I was talking to my mom on the phone and told her I had been feeling strange, like my body was having baby seizures. Mind you, I have never had a seizure, so I had no idea what I was talking about. Shortly into the conversation, I stopped being able to speak. I laid on the floor, and my body started convulsing. I was still able to text my mom and let her know I was conscious, but I didn’t know what was going on. I told her I didn’t want her to call the ambulance because of the cost. (Yes, I was very aware that it was the beginning of the year and my deductible had just reset.) I already had an expensive medical history.
My mom got into her car to come to me an hour away and had me on speakerphone. After a few minutes of me convulsing and her having to hear me gasp for air, she told me she was going to call 911. I managed to slowly drag myself to the front door to unlock it, all the while convulsing on speakerphone with my mom. I was about to go on my first ride in an ambulance; I found out this is the fastest way to receive care. My symptoms were similar to those of a stroke, so I had some scans and was evaluated by a stroke specialist.
I spent a few hours in the emergency department with no answers that made sense. I was frustrated and felt like no one else believed me about what was happening. I left the hospital feeling judged because my symptoms seemed to decrease after given anti anxiety medication. Over the next 24 hours, I had over 20 of these “pseudo seizures” and was not able to speak. I returned to another hospital and was told that I had conversion disorder, which is an outdated term and is now referred to as functional neurological disorder (FND).
After not being able to speak for nine days, it was definitely time to take action. After a lot of research, I found a few steps to take. I found a therapist who specializes in connecting the mind to the body through eye movement desensitization and reprocessing, tapping, and other techniques for dissociating. Having a background in counseling, I was wary, but I gave him a chance and continue to see him a year later and have a full shed of easy and accessible tools to make my world a lot easier. I also joined an intensive therapy group and went three times a week for three hours each visit.
The woman who led the group opened my eyes to concepts I had never considered before. She referenced mindfulness, helped me stay out of the emotional extremes and gave me confidence that I would be OK. Between the two therapy experiences, my confidence in taking on everyday challenges increased. This did not, by any means, “fix” me.
At the time, I would have done anything to feel better. I started using essential oils, changing my diet, and going to acupuncture on a weekly basis. I currently receive massage and physical therapy to help manage my chronic pain. I am incredibly lucky to have decided to pair western medicine with “alternative” care. I have built myself an incredible support system with loving caregivers, friends, and most importantly, family members.
My battle with this uncomfortable, unpredictable condition is far from over. Just this morning, I had to ask my roommate to help my body get “unstuck.” It is embarrassing to ask people for help when I can’t talk, have limb paralysis, get dizzy and have blurred vision. I have even more memory loss than I already had and struggle to move. My body thinks it is funny to trick me and presents slightly different symptoms each time to keep me on my toes. After four visits to the emergency room and two ambulance rides, I finally have figured out that I am not, in fact, dying, and I know what to do to make things manageable. I have also installed a medical emergency app on my phone for when I am not able to talk.
I want more than anything to make this all stop. I hate getting stressed and knowing it will catch up with me in the next few days at an unpredictable time. It is hard to be in situations where I don’t feel like I have control. It has been a struggle to go back to work knowing I am not able to have control over my environment and interactions at all times. The people in my life know I make jokes about my conditions so I can keep moving forward. I have started reading articles on The Mighty and have found a place where I can relate to other people’s experiences through their writing.
“When Your Brain Stops Talking to Your Body” was written by Cathy O’Brien who also struggles with FND. She links a number of informative articles and websites to her article, and it feels so good to know there are resources out there and people who actually believe this is a thing happening in my mind, body, and spirit. I am not making it up, and I am not leaning on it as a way to get out of something or get attention. Listen people, I know the struggle is real, but we are all in this life together and need to educate ourselves, form support tribes, and listen to our bodies when they are asking for help or attention. You are not alone!
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Thinkstock photo by David De Lossy