How I Discovered My Inner Superhero

Working with Myasthenia Gravis has Made Me Realize My Inner Superhero

Retha De Wet avatar

by Retha De Wet |

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I started working as a speech therapist at a large academic hospital in January 2020. I was excited to start, and my passion for the job was coming out of my ears. But lurking behind the joy of getting such a thrilling job was a buildup of anxiety, shame, guilt, and self-doubt.

At the time I was diagnosed with myasthenia gravis (MG), I was studying to become a speech therapist. I was fighting so hard just to make it to the end of each semester that I never planned for my future. Of course, I had a dream career, but I never focused on making active plans. It just seemed like getting my hopes up was the beginning of more heartbreak.

During my first year of work, I survived so much more than I ever expected to. This was at the start of the pandemic, my health was incredibly fragile and continuously fluctuating, and I was suddenly in a long-distance relationship with my boyfriend, Tom. I was hospitalized six times and received multiple rounds of plasmapheresis during this time, yet I still excelled at my job.

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At the end of last March, I started working at a development center for children with special educational needs. It was incredibly challenging, but growing up with a sister with cerebral palsy prepared me with enough compassion to thrive in this setting. My past self would never admit it, but I’ve always wanted to be a neurodevelopmental speech therapist, my dream job.

The reason I was able to excel at both jobs? I had incredibly supportive colleagues and management. The reason they were able to support me? I was honest with them beforehand about my condition and my limitations. It came naturally to me.

I have learned that being honest and upfront about my condition yields the best long-term results. If a work environment is supportive, we can thrive despite our MG. However, the reverse is also true: Bad work settings can result in MG symptom flare-ups. People respond to the reality we present, and always hiding our MG doesn’t help anyone.

Being honest and open about my diagnosis has resulted in less anxiety when MG does interfere with my work performance. For example, I struggle with wheelchair transfers when I am having a bad day, but I am 100% fine on other days without any help. Being honest also means people have empathized more with me.

The principal at our development center has told me that my ferocity and fighting spirit reminds her of a Marvel character. The fact that someone can see the way I live my life as a superpower has left my heart with a smile. It’s an expression of admiration that I do not find condescending or filled with pity. She has henceforth renamed me “Captain MG,” and said my life could be a movie.

A few years ago, if you had asked me what movie genre would best represent my life, I would not have said a superhero movie. I probably would have said a drama in which I would likely die at the end.

Don’t suppress the superhero in you by refusing to try things because you assume the worst outcome will happen. Some people with MG can work, others can work only part-time, and still others rely solely on disability grants. All of them are superheroes.

If we continue to share our stories, we can find more people who view us as superheroes.

Life is beautiful. Never stop fighting.

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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

Hettie avatar

Hettie

Diagnosed in November 2020, as ocular myasthenia gravis had double vision. got Prednisone, Mestinon, Azathioprin.
In Jan 2021 had Lens replacements, could see properly. Then had a crises and April underwent Plasmapheresis,
Then they discovered I changed from Hypoglycemia to hyperglycemia. O yes also High Blood pressure.
My eyelids are still not functioning properly. My eyelids has not improved, I get tired a lot, and have reflux.... if I try to do something bending forward like picking up something, or weeding, get hyperglycemia ... do not know if any other meds will help. How can I solve the problem.. O yes and Sjogren's disease.

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Nasasira carolyne avatar

Nasasira carolyne

Iam a Ugandan was diagnosed in early June but have been battling with the symptoms for 2years without the diagnosis I get tired easily both legs and arms are very weak I am currently taking mestion azathioprine vitamin b complex and predisolone for sure living with maysthenia gravis isn't simple it needs a strong person

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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.