How I Became an Advocate for Myself and My Healthcare Needs

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by Michelle Gonzaba |

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Strength in Weakness column by Michelle Gonzaba / grief

Today, May 5, is widely celebrated in the U.S. as Cinco de Mayo. As a proud Mexican American, I never ignore this particular day. While I don’t party hard like others, I do take a few minutes to acknowledge the meaning of the day.

Cinco de Mayo celebrates the defeat in 1862 of the French army at the Battle of Puebla in Mexico. While it’s only a minor holiday in Mexico, those living in the U.S. acknowledge the day as a celebration of Mexican culture. 

Whenever this day comes, I take the time to think about my Hispanic heritage and how it influences my life. One of the most surprising ways it has affected my life is in the diagnosis and treatment of my myasthenia gravis, or MG.

Before my diagnosis, as my symptoms worsened by the day and my stress climbed by the minute, I never expected that my culture would affect the way I was treated in a medical setting.

Like many people with MG, I was not diagnosed promptly. Rather than viewing my symptoms as part of one comprehensive disease, doctors tried to find different causes for each type of weakness I felt. After numerous doctors’ appointments, tests, and scans, a doctor finally mentioned MG as a possible cause. 

When that happened, I immediately felt relieved. I finally had a name for the disease that was affecting my body. But that respite was dampened by an offhand remark about how I shouldn’t use “any of those Mexican witchcraft spells” to help alleviate my symptoms.

So many thoughts raced through my head when I heard that. Why would someone think I would try those things? What made this healthcare worker even think of that? 

I never thought a medical professional would use my culture to make me feel small. The comment made me feel that perhaps I was being taken less seriously than other patients. I was grateful for the diagnosis, but I left the clinic agitated. 

Unfortunately, I’m not alone in feeling this way. According to media reports, racial and ethnic bias in healthcare is an ongoing problem. Even tennis legend Serena Williams was initially ignored when she tried to alert her doctors to a life-threatening situation after giving birth to her daughter.

My experience left me feeling stupid. But on days like Cinco de Mayo, I remind myself to be proud of my heritage and to fight back against bias and stereotypes.

In a perfect world, I would have followed up about the comment that bothered me. Maybe that would have led to a constructive conversation. Maybe I would have been taken more seriously. I also wonder if I might have been diagnosed more quickly if doctors had listened more closely when I previously described my symptoms.

Throughout my many doctors’ appointments and discussions with specialists, I have always reminded myself that I have a responsibility to advocate for myself. No matter what biased opinions someone might have, I must use my voice to respectfully explain what my issues are. Not everyone is physically able to do that, so it is also important to help family and friends who can’t advocate for themselves.

This Cinco de Mayo, I encourage everyone to be proud of who they are and to remember to always stand up for themselves. Make sure your doctors listen to you. Don’t accept any nonsense that doesn’t sit right with you.

And, hey, it’s Cinco de Mayo, so have a few bowls of guacamole! You’ve earned it.  

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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

David Riklan avatar

David Riklan

My Myasthenia Gravis (MG) symptoms started at the age of 51, I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently done with my herbal remedy I purchased from multivitamincure. org which has totally cured my condition with a surprise after almost four months of their usage, I was discouraged and never thought I would be myasthenia gravis (MG) free today,to me the best way to get rid of this condition is multivitamincure. org herbal recommendation because all medications I used never worked include mycophenolate (CellCept).

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