Diagnosis Opened My Eyes to the Importance of Community

Michelle Gonzaba avatar

by Michelle Gonzaba |

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PTSD, awareness, exercise, travel, community, hiding, Cinco de Mayo, IVIG therapy, COVID-19 vaccine

I’ve always been a bit of a loner. Even before I was diagnosed with myasthenia gravis (MG), I tended to keep to myself. As I stated in a previous column, privacy has always been important to me.

We could dive into my psyche and analyze why I prefer to keep parts of myself hidden, but that’s a far more appropriate job for a psychologist. Nevertheless, I still enjoy being a loner. But as I’ve grown older and lived through different experiences, I’ve realized how important it is to have some type of community to rely on. 

When I was diagnosed with MG, I felt incredibly alone. Although my family and friends were supportive, they didn’t really understand what I was going through.

How do you explain MG to someone who doesn’t have it? How do you describe the fear and grief that constantly cloud your mind? At that moment, the only people I wanted to talk to were those who knew what I was feeling. Unfortunately, I wasn’t able to find a community of people who would understand my journey.

When I Googled “myasthenia gravis,” I mostly found scientific articles or generic websites that listed only symptoms and complications. As someone who was just diagnosed, I wasn’t eager to see all of the possible outcomes of this disease.

But I did learn one thing during my search for information: I realized how important having a community is. A community holds the power to inform and uplift people all over the world. 

Those at Myasthenia Gravis News know how crucial community is. That is why we have recently launched the Myasthenia Gravis News Forums. This space allows us to meet and talk to others who know what we’re going through. From questions about treatments to advice on self-care, the forums provide information about a multitude of topics related to MG.

To join, just register by clicking the “register” button in the “log in” box on the right side of the screen. 

When I was first searching the web for information about MG, this type of forum would have been a game changer for me and my mental health. Knowing that at least one person in some part of the world understood what I was going through would have made me feel less alone, maybe even less scared. That is why I am excited about the MG News Forums. 

Even if you’re a bit of a loner like me, it doesn’t mean you must carry everything on your shoulders. Take a breather, let yourself and your mind rest, and take a minute to explore the resources provided by the new forum.

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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.

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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.