Thriving in Marriage After MG

When I was diagnosed with myasthenia gravis (MG), my husband and I had been married for 5 years. We had 1 toddler and a baby on the way. Our marriage was weathered from the challenges of parenting, but still strong. We had made a commitment to one another and honored that commitment.

I had always taken on the bulk of the parenting duties, as they came naturally to me. Things such as preparing meals, taking my son to school, changing diapers, giving him a bath, and putting him to bed. Though my husband was always willing to help, I never asked him to because I honestly felt like I did it better.

A sudden role reversal

As my symptoms progressed, I slowly lost the ability to keep up with all that I had been doing. I found myself bedridden and unable to give baths or change diapers due to my increasing neck weakness. I had to ask my husband, family, and community to step in.

The first time our role reversal really took place was when I was admitted to the ICU. Suddenly, my husband had to take on parenting solo. I felt helpless and anxious that he wouldn't be able to handle everything.

Over the years, I unknowingly began to put my pride in my parenting. I had high expectations, which in turn became a big source of anxiety.

I expected the house to be clean, meals to be made, clothes to be in order, and life to be on schedule. My sense of control in life was pulling away at the seams, and putting stress on my marriage.

Letting go of expectations

In the stress of our situation, we got into a heated discussion. I wanted things a certain way, and my husband couldn't deliver. He was trying his best to be a husband, father, and caretaker while working full-time.

My husband has always been a peaceful, joyful person. Even through tough times, he never let his anger take hold of him. When I saw his disappointment and frustration, I knew I had to re-evaluate what was important to me.

There was only so much our family could handle with my new diagnosis. I had to let a few things go in order to survive through this storm. A clean house, perfectly dressed (and bathed) child, and homemade meals were really not as important as our sleep and well-being.

Learning new practices

As much as I could, I practiced forgiveness and gratitude. I learned to let go of resentment. Resentment for not being able to live up to my expectations; not being present in my pain, not being able to understand, and not knowing what to do.

I started to see how hard things were from his eyes - how difficult it was taking care of 2 people who desperately needed his time and energy, and worrying if I would ever get better while performing well at his job.

My eyes began to open to all that he did to sustain this family. My heart was softened, and our family became healthier and happier. We found a rhythm that worked for us, and I made sure to ask for help when I needed it.

Though I am not experiencing any symptoms now, things look very different from life before my diagnosis. My husband and I share the parenting responsibilities in a way that supports one another. We practice forgiveness, kindness, and gratitude as much as we can.

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