Years Later, I’m Learning How MG Affected My Family

Michelle Gonzaba avatar

by Michelle Gonzaba |

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Strength in Weakness column by Michelle Gonzaba / grief

I was diagnosed with myasthenia gravis (MG) at the self-centered age of 19. Ah, 19, that beautiful age when we think no one else in the world has worse problems than we do.

While I wasn’t a total monster at that age, I was handling my problems in unnecessarily dramatic ways. I should take full responsibility for my behavior, but I blame the MTV reality shows I watched every day.

Nevertheless, when I was diagnosed with MG, I reacted in a way that was totally appropriate for my age: I declared that my life was over and nothing could be done to save me. For the first few months, I had a pretty bad attitude. I followed my doctor’s orders but was consumed with self-pity. How could this happen to me? I didn’t deserve this!

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While I was stuck in this never-ending loop of fear, self-pity, and anger, I never once thought of how MG was affecting my family. For too long, my thoughts were focused only on how MG was affecting my life. I didn’t realize I wasn’t the only one whose life had changed forever.

It’s too easy to become wrapped up in our own problems. It happens to the best of us. But now that many years have passed since my diagnosis, I’ve begun to think about how MG affected my mom and my sister.

During the worst parts of my MG journey, my family put on some really convincing façades. They were worried, yes, but they never showed any emotion that could have negatively affected me. After recently speaking with them about some of the more frightening periods of my disease, I discovered what they had hidden to protect me from more stress.

They told me about how they couldn’t sleep when I was in the ICU. My mother described her fear of getting a phone call in the middle of the night from the hospital with bad news. My sister described the helplessness she felt when she saw me gasping for breath before being intubated. It was incredibly tough for me to hear, but absolutely necessary for me to understand.

After having this tearful conversation with them, I felt both thankful and guilty. Maybe if I had just taken better care of myself, I wouldn’t have ended up in the ICU. If I didn’t end up in the ICU, then they never would have experienced those horrible emotions.

But I knew I had done everything I could to handle my MG, and some things were just out of my control. I knew my family didn’t blame me. And I knew I would have reacted the same as they did if the positions had been reversed.

Now that I know what they went through, I am more grateful than ever for them. They have taught me to always take a moment and ask those around me if they are OK, no matter how I am feeling. MG isn’t just my burden to bear, it’s a load my family is more than willing to help with.

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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.

Comments

Jonathan D AUTORE avatar

Jonathan D AUTORE

I don't know how long it took you to be diagnosed with Myasthenia Gravis ... but I had totally the OPPOSITE EFFECT. It was July 25, 2019 when I showed my first symptom (I had just turned 68 on June 8th and was feeling great and still working). It took me 8 LONG MONTHS of searching for a diagnosis and no DOCTOR would believe me having every MG symptom (except breathing issues). I was finally diagnosed by a floor nurse after 2 months, in second of three hospitals ... (got disgusted with my doctors, after 6 months and went to a Banner Hospital URGENT CARE CENTER) who recognized my symptoms from her other patients. I WAS THRILLED TO DEATH THAT I HAD M.G. Some one finally BELIEVED ME !!! I HAD A NAME FOR MY DISEASE !!! I could google MYASTHENIA GRAVIS once home .... and get answers ... after I had spent 4 months in the hospital ... recovering from the three types of PNEUMONIA ... that the first clueless hospital gave me in ICU. I was happy .. found a REAL MG NEUROLOGIST to replace my "CLUELESS" family practice doctors (and their MANY referrals) and have been in remission for a year now.

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Claudia ricki avatar

Claudia ricki

Had same thing. Got pneumonia in hospital. How did you fry to remission?

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Patricia McNiel avatar

Patricia McNiel

What did you do to go into remission?
Pattie

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