Moving Forward Starts With Speaking Out

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by Michelle Gonzaba |

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Normally, I don’t have a hard time talking about various subjects. I could spend hours discussing Academy Award nominees, arguing about why Slack is better than Microsoft Teams, or gossiping about the British monarchy. Speaking up isn’t the problem — it’s the subject matter that trips me up.

When I was diagnosed with myasthenia gravis, I avoided any kind of emotional talk. My strategy was to focus on getting better, and in my mind, sharing my feelings wouldn’t help.

This strategy worked for a while. As I focused on regaining the ability to chew and swallow food following a traumatic MG crisis, it was easy to push emotional thoughts to the back of my mind.

But as I regained my strength and eventually went into remission, family and friends started to feel more comfortable asking questions about my rare disease. They asked about what it was like to be unable to walk, how it felt to have a feeding tube tangle in my throat, and the other super fun parts of experiencing severe weakness.

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I always gave generic and harmless answers. “It was difficult, but I’m great now,” I’d say so many times that I should’ve copyrighted the phrase. I never went into detail, and I avoided sharing how I really felt about my experiences with MG.

I wasn’t comfortable sharing my emotions because they felt too personal. My anger, sadness, and grief were nobody’s business but my own. What good did it do to make others feel bad by describing how tough everything was for me?

But my feelings about, well, sharing my feelings have changed. And speaking out has given me a new way to process my emotions.

I was invited to participate in the BioNews Rare Disease Day Panel on Feb. 28. A few weeks ago, I wrote about how rehearsals and discussions before the panel helped me feel less alone, but the panel itself showed me how important it is to talk about my experiences.

While talking about my MG, I realized how much I wanted to use my journey to help others who are scared and unsure about what the future holds for them. I finally understood that sharing my traumatic experiences can help others. Finally, opening up wasn’t so difficult anymore.

It took me years to feel comfortable enough to speak about my MG. I would never pressure anyone to talk about their own experiences before they’re ready, but I would say that it doesn’t help to keep your emotions inside. Acknowledging hardships is the first step in moving forward.

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.


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2021 Myasthenia Gravis Survey Results

BioNews Survey Infographic

Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.