I was only nineteen when my symptoms first started. It started with my eyelids drooping, and I didn’t think much of it. A month later, I started seeing double and that’s when the symptoms really started to progress, one after each other, each month. I remember the overwhelming feeling of frustration. I started having difficulty chewing, swallowing, speaking and pronouncing words. I was a very sociable person, so it embarrassed me. I didn’t know what was happening to me, and those close to me were confused and didn’t know how to help. I remember specifically my eyelid was so drooped and the other one was shot open, double in size. It just looked so weird when I looked in the mirror. I thought oh my goodness, what is happening? When I experienced the double vision, I decided it was time to see the doctors who promptly sent me to the emergency room where I was diagnosed after a few hours. The thymoma they identified in a scan along with a combination of other symptoms indicated MG. I was very lucky they caught it early. Since then, the symptoms of MG have impacted all areas of my life. I’ve always been an adventurer at heart. I love to keep active, biking, weightlifting, and being outdoors. Since being diagnosed with MG, I sometimes feel robbed of these joys. It takes a huge toll on my mental health, not being able to move the same way and keep up with my passions. Even day-to-day, I’ll feel my legs tripping when I go for a walk, or my fingers aren’t gripping the knife when I’m preparing food. Over time, I’ve had to learn not to push myself and to rest. It’s frustrating and something I still struggle with. I was socializing in a bar, excited about something. Not even 20 seconds in, my speech became garbled, and I remember just breaking down and crying, like what’s wrong with me. My career as a paramedic was important to me, but I had to face the reality that my body could no longer manage the physical demands of the job. It wasn’t safe or sustainable for me, which led me to re-evaluate and take a step back. For someone that is career-oriented, that was hard.Even in motherhood, I’ve had to adapt to the demands of MG. On the days where I’m experiencing a flare-up of symptoms, I’ll have to arrange childcare or alternative arrangements for my daughter. My husband is a great support, but when he’s busy, it can be tough pulling in grandparents to help. Having a support system around you is so important but often comes with this gnawing feeling of guilt. Myasthenia Gravis is an invisible disease. My physical symptoms are not often seen or acknowledged by others. People might not see these things happening to me, they might think I’m perfectly normal and healthy, but it is very real to me and very debilitating. I’ve had to learn to ask for help, advocate for myself and to be more honest with others about my needs. MG might be invisible, but I make sure that I stay visible.
