Believe it or not you are not born with fear. Fear is embedded in us over time. Think back to a younger you. Vibrant, relentless in doing exactly what you wanted. You jumped first and looked second. Somewhere along the line, you grew more cautious. You became cognizant of what danger is and potential repercussions to certain situations.
For some people fear can be paralyzing. That fear can only be magnified when are you caught off guard with tragedy or unforeseen circumstances. Remember Regina from Mean Girls?
This is how I feel in regards to my MG and if you too have an autoimmune disease you can relate to the story. Everything is fine. You’re happy. You’re healthy. You’re thriving. Without notice it all changed.
The majority of the fear is “what is happening to me”? Depending on what your symptoms are you make just think you’re tired and overworked. I remember feeling off but thought it was my “allergies and sinuses”. I went around for 2 weeks popping Zytrec like it was TicTacs like a dummy. Once the double vision and droopy lid set in I knew it was time for a Dr appointment. Clearly my vision wasn’t issue.
Lucky for me my opthamologist new something was wrong and ordered MRIs, CTs and referred me to a neurologist. Unlucky for me, her eagerness to help me was overshadowed by the sounds of her saying “you eye isn’t moving” on loop in my brain. That intensified my fear. I’m not sure if doctors recognize that the manner in which they give a patient news concerning their health can make or break a patient.
When the neurologist told me that I had MG very nonchalantly and matter of factly I was kind of frozen. I didn’t know what to make of it. But whatever paralysis I was in was broken when I heard the word incurable. He explained the disease in technical/medical terms (that I could barely understand) gave me a prescription for medication and sent me on my way. I left feeling grim, hopeless and scared shitless.
I thought understanding would help ease my anxieties so I turned to everyone’s best friend Google for answers. For hours I web surfed reading horrible stories, looking at pictures of bed ridden individuals and finding scientific data that confused and overwhelmed me. The despair in the pit of my soul grew and I cracked. Sometimes knowledge is power. Sometimes it’s suffocating.
Myasthenia Gravis (MG) is one of those special diseases in which the cause is unknown. Remember that gif from early? I’m Regina and the bus is my MG. There are a bunch of theories within the medical field as to what causes MG but nothing concrete. Some say it’s hereditary, others say it’s not. While the experts may not agree of the cause, they can agree on what it does. I’ve managed to water down the medical terminology and come up with my own definition of what MG is. This actually helped make it a little less scary.
When people ask me what it is, I say MG is a neuromuscular autoimmune condition in which my immune system is attacking the signals that tell your muscles to function. A person with MG may experience : droopy lids, double vision, difficulty chewing, talking, swallowing, and/or breathing as well as arm, leg and neck weakness.
I chose to use the term condition instead of disease because it seemed less hopeless. Disease strikes fear within me for some reason. It sounds like something you can catch. Something infectious or detrimental. Conditions are just the current state of things. As in, yes currently I’m experiencing this but it won’t last forever. This is not my final state of events.
After the fear of what is this subsides you move into a state of fear in terms of what’s to come? How do you function “normally” with this death cloud looming? It’s almost like you stop living. Afraid to do anything because it might upset your body and send you into crisis.
As afraid I am of what could happen if I decide to do something, I’m more afraid of NOT living my life. While having an incurable autoimmune disease is scary AF, it is 100% possible to get your symptoms under control. It will take time, trial and error and patience. It will require you to face your fear head on instead of running from it or letting it overtake you. Don’t let what anyone (doctors, parents, siblings, friends) speak more fear into your life. Don’t let other people’s stories dictate how your story will end. Grab the pen and write your own book. You can take back the power. Be brave. Be relentless. Be fearless.
Got MG (or another autoimmune disease)? How have you overcome the fear that came along with it? If you’re still struggling with post diagnosis fear, I challenge you to channel your inner BoneCrusher and repeat after me… WE AINT NEVER SCARED (or at least fake it til you make it).