Wondering if my myasthenia gravis diagnosis changed my personality

I have been told that I’ve changed since my diagnosis of myasthenia gravis (MG).

For a long time, I said I hadn’t, that I was still the same person I had always been. But lately, I’ve been wondering if they were right. I used to be cheerful and carefree, and my personality was always bubbly, fast-paced, and sometimes a little too high-speed. I liked living quickly, saying yes, going places, and doing things without thinking too much about the consequences.

But having to think about every move I make, every activity, every amount of energy I spend, and being scared of pain and exhaustion has definitely changed me.

The same thing happened with my relationships. I waited at first for people to understand what had happened to me. Then I started getting angry that they couldn’t understand what felt to me like such a basic concept — chronic illness. I’d get angry when someone invited me for a hike, even after I had explained that I couldn’t do it. Sometimes I would end up shouting, and then crying, because underneath all that anger was something much simpler: I felt lonely in my pain.

Living with MG has made me grumpier and more socially isolated because somewhere along the way I began to assume that people wouldn’t understand. That I was living in some invisible, inaccessible world of sadness that nobody could really enter. And it’s not only that I was afraid they wouldn’t understand: I was afraid they would judge me. Or worse, pity me.

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Changes

I am also more pessimistic than I used to be. Before thinking about whether I want to do something, I automatically think about everything that could go wrong. How exhausted will I be? Will I be in pain? Will my muscles get sore? What if my neck gives up? What if I have trouble breathing?

So instead of saying, “I would love to spend the day at the beach,” I am more likely to ask, “Can my body handle a full day at the beach?” And that question doesn’t only make me cautious. Sometimes, it makes me sad. Sometimes, it makes me pessimistic before anything has even happened.

I also sometimes catch myself speaking angrily, rushing through things, or getting frustrated for what seems like no reason until I stop and do a quick body scan and am able to realize it’s the silent pain in my neck, the soreness in my arms, or the exhaustion I wasn’t conscious of and hadn’t noticed.

Things trigger very specific frustrations in me. I get incredibly frustrated when someone asks me to write. I left university partly because of this. I was studying physics, and writing wasn’t just something I had to do. It was part of how I thought. I loved drawing diagrams and schemas to visualize a problem. Writing equations by hand was part of the process of actually thinking through a solution. I tried digital alternatives, but somehow, they never worked the same way in my brain. So something as simple as being asked to write can bring back a whole world of frustration that other people can’t see.

My personality also shifted because of the expectations I had around my diagnosis. When I started looking for an explanation for my symptoms, I imagined it would be simple: We find the illness, we get the cure, and we move on. I didn’t know that you could get an answer and still not have a solution. I had no idea how many chronic illnesses there were, let alone that I could end up with one of the trickiest ones.

My best friend

But as much as I hate MG, I’ve started to consider it a bitter best friend. It is always here. It knows me better than most people do. It is there when I wake up exhausted, when I cancel plans, when I’m angry for no apparent reason, and during the nights when I struggle to inhale enough air into my lungs. It is there when everyone else has gone home. It has become my longest companionship. And maybe nobody will ever truly understand what that kind of relationship feels like. So when people speak badly about it, it makes me angry.

I don’t know how illness changes a person’s personality, their relationships, dreams, or perception of the world. But I do know that everything that crosses our path changes us somehow, directly or indirectly. And so maybe people are right. Maybe I have changed.

But perhaps changing doesn’t mean becoming someone else. Maybe it means learning how to be yourself in a life that no longer works the way you once expected it to.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.