I’m an introvert at heart. I wouldn’t say I was a social butterfly before life with myasthenia gravis (MG), but there are differences in how I interact socially today. In the past, I would attempt to go to an event occasionally. I’d “pop in,” show my face for 10 minutes, and leave. Now a lot of planning goes into it, or I will cancel. Has MG changed my social life? Absolutely. I’ll explain.
I read a quote somewhere that “just because I did the thing yesterday, doesn’t mean I can do the thing today.” With MG, I could stand in the kitchen to cook a meal in the morning and be unable to stand in the evening that same day. MG symptoms can be unpredictable and require that I continuously pay attention to my body. Imagine trying to schedule a date night and not knowing if you’ll feel strong enough to go.
It got stressful. Making plans with a friend in advance and having to cancel was stressful for me. After one too many failed attempts to meet up, I stopped receiving invites altogether. At first, I felt hurt and upset, but then COVID-19 made social gatherings even scarier for immunocompromised folks. The pandemic has contributed to my anxiety and lack of social life. Sometimes I’m afraid to hang out with a friend because of the fear of getting sick.
On the rare occasion when I leave my house to be social, prepping and planning is necessary. It took a while for me to understand some of my triggers with MG. Like which activities make me tired, what time of the day I have more strength, etc. If I have something to do, I carefully preserve my energy days beforehand. I also eat and hydrate to ensure my body has the essentials to do what I need in the coming days.
Have you ever gone to sleep and still wake up feeling tired? No matter how much time you spend in bed, you don’t feel rested. It’s almost like your muscles ache if you think about moving. I feel like this most days. I’m describing life with chronic fatigue. I’m not sure what causes me to be so fatigued. I do know, however, that it’s another obstacle I overcome when trying to have a social life. Being social requires energy, and I’m always lacking it.
Overall, living with a rare disease like MG has changed my social life. It requires that I now put emphasis on caring for my body’s unique needs and planning for social activities in advance. It also helps me remain cautious and mindful in public to prevent illness. I don’t mind the adjustments I’ve had to make, but maybe it’s the introvert in me.
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