Managing Flares by Listening to My Heart
The first few months after my myasthenia gravis (MG) diagnosis, I had to quit my job. My vision was consistently double and ptosis made it difficult to stare at a screen all day.
I didn't feel safe driving in bumper-to-bumper Bay Area traffic with so many blind spots, so commuting was out of the question. I suddenly found myself laying on the couch, only getting up to eat or drink.
Becoming aware of my feelings
Growing up in a culture that didn’t celebrate emotions, I always tried to shove my feelings down. Over time, these emotions built up and resulted in constant stress and anxiety.
The only way I knew how to express my emotions was through sudden outbursts or being passive-aggressive. Learning to become more aware of my feelings has been a continual learning process.
It’s incredible how long we can allow trauma to become the backseat driver of our lives. Once my heart had space to speak, memories started pouring in. It was like the floodgates were opened.
Accepting my emotions
Memories that I would just brush away before had endless time to present themselves. Painful memories, joyful memories, shameful memories, and beautiful memories. I spent time detangling the painful ones, forgiving myself and others. I reveled in the joyful ones, taking note to make much more.
As I gave room for feelings to take center stage, I was able to process and heal so I didn’t feel the need to shove them down anymore. By first accepting my emotions, I could step back and make decisions rather than feel out of control.
I found an amazing therapist and committed to being vulnerable, honest, and intentional. I opened up about my deepest insecurities and traumatic experiences. Over the following months, the heavy burdens I carried began to crumble.
Becoming aware of and accepting my emotions grounded me in my identity. I began building a sense of safety within myself rather than trying to find it in others. Instead of focusing on pleasing everyone else, I started thinking about what I needed and learned to ask for it. These practices began to bring peace and order into my life.
Finding what motivates you
Another great tool that has helped me immensely in understanding my heart is the enneagram. The enneagram is a personality typing system that outlines the patterns in how people understand the world and manage their emotions.
As a type two, I am constantly thinking about my relationships and love to serve those I care about. Because of this, it is difficult for me to receive from others. MG forced me to let my community serve me in my weakness and need, which has become a huge growing point.
Learning about the nine types has also helped me become more compassionate in my relationships, understanding that we all operate in the world uniquely. There are plenty of enneagram resources out there now, and I encourage you to do your own research. Find what resonates with you and motivates you to grow more attuned to your heart.
Putting my heart at the center did not make me the emotional mess I feared I would be. It actually empowered me to become more emotionally aware and intelligent, more empathetic and resilient.
I find that I am less triggered by the daily dealings of life. Though MG tried to take away my sense of normalcy, it has opened the door to a new way of living. I tread more lightly, live more freely and face each day with joy and gratitude.
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?