5 things I learned about managing myasthenia gravis and family

Last updated July 16, 2025, by Jasmine Nathan

 

Balancing family life with a chronic illness like myasthenia gravis (MG) isn’t something you’re taught — it’s something you learn, one day, one flare, one small victory at a time.

Some moments stretch you, some moments break you, and other moments remind you just how powerful you truly are. Living with MG and raising a family isn’t about being perfect; it’s about being resilient. Being real. And finding your rhythm — one filled with compassion, creativity, and the kind of resilience that only a parent living with a chronic illness can truly understand.

This is what I’ve learned — and still am — about integrating family life and MG.

1. Communicate openly with your family

MG is not just a diagnosis but an essential part of your day-to-day life. In some cases, when your family may not always notice your fatigue, asking them to develop a habit of checking on you can be beneficial. Open communication is the key to ensuring that your family truly understands what you’re going through.

I learned this the hard way: after carrying grocery bags up three flights of stairs when I lived in a Chicago walk-up. I had to stop at every corner. In asking my partner for help, I had to be honest with myself and accept that I wasn’t being a burden. It was a bridge to understanding my diagnosis for both me and my partner.

But changes in the family dynamic doesn’t happen overnight. It takes time and patience. So, open communication is key.

2. Plan for your energy, not just your schedule

With MG, some days are good, and others aren’t. I’ve learned to prepare ahead of time for flare-ups of symptoms whenever possible, including meal planning, selecting clothes the night before, and even spending quality time with friends.

In the chronic illness community, the spoon theory is used to represent the amount of energy expended on daily tasks. It is based on the idea that you start your day with a limited number of “spoons.” Each task, from getting dressed to cooking a meal, requires a certain number of spoons.

Putting this into practice, you can better plan your day and manage your energy, ensuring you don’t overexert yourself. For instance, today, in writing this article, I didn’t need any spoons, thank goodness!

When navigating your energy, whether that’s using the spoon theory or just gauging how you feel, grant yourself grace whenever plans must change.

Flexibility is your ally in managing MG, allowing you to adapt to the challenges it presents.

3. Maintain a strong relationship with your healthcare team

Managing MG while having a family requires medical support you can trust. I have an open line of communication with my neurologist, and I never hesitate to advocate for reassessing treatment options.

When I was diagnosed with MG, my partner and my stepson were with me in the hospital, and the doctor and his team were so friendly as they stood at the end of my bed. While I was not thrilled to hear that I had been previously misdiagnosed, I did, however, feel supported.

4. Build your village

Whether from family, neighbors, or friends, you should recognize when you need help and not hesitate to accept it.

Having a partner who is present and can accompany you to appointments, take notes, or help you remember details is essential. But so is building a “’village” of support. Let people bring meals, watch your kids for a couple of hours, or pick up something from the store.

My community has been a lifeline for me, including when I was hospitalized during my diagnosis. I had a friend come for a visit, and at the same time, I was having a painful procedure. Though scared by everything going on, she held my hand with a look of courage, and that gave me strength.

5. Don’t try to be a super-parent

As a stepmother, I know my child doesn’t measure my love by how much I do.

They feel it in the little things: the cuddles on the couch and words of encouragement. I had to redefine what showing up meant and stop comparing myself with other moms with different capacities. Presence, not perfection, is what my stepson will remember.

The truth is, MG is not something I would have chosen, but it has taught me how to love deeper, lean on others more fully, and lead my family with empathy. There are challenging moments, of course. However, there’s also great beauty in seeing how far we’ve come together.

If you’re a parent living with MG or dreaming of becoming one, know this: It’s possible. Not without challenges, but absolutely with joy.

And you don’t have to carry it all by yourself. With faith, support, and a little flexibility, you can create a family life that’s full of strength, softness, and connection.

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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.