Being a woman affects the way I experience myasthenia gravis
I worked to define my womanhood, only for MG to tell me what I can and can't do
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I’ve always felt that being a woman put me at a disadvantage. I don’t dislike being a woman, but I have never really fit into the box society has created for me.
I am happier being an independent entrepreneur than imagining myself as a stay-at-home wife. I want a career, financial independence, and the freedom to build something of my own. But this field is dominated by men, and I often feel like I have to prove myself.
But once myasthenia gravis (MG) entered the picture, I found that I had even more to prove.
Being a woman with MG
When I was diagnosed with MG, I didn’t think that being a woman would affect the way I experience it or influence how I live with the disease. I spent years trying to define womanhood for myself, only to have MG start defining what my body can and cannot do.
Let’s start with my period.
Those are some of the worst days of my life. About a week before it starts, I feel like I don’t even belong to my own body. My arms become heavy, my legs are sore, and every muscle feels tense and painful. Almost all my breathing difficulties seem to occur exactly then.
Doctors tell me there is no established connection between periods and MG, but I see the pattern every month. My gynecologist and I have ruled out other explanations. I know my body, and something clearly changes during that time.
Speaking of pain, a woman’s pain is perceived differently than a man’s, I believe. We associate strength with men, so when a man says he is struggling, we tend to believe him. But when a woman says she is hurting, we wonder if she is just being sensitive, emotional, or exaggerating.
Then there’s motherhood.
Having children with MG has become one of my biggest fears since experiencing paralysis. Every time I try to lift a friend’s baby, my arms fail me, reminding me that my body may not allow me to experience motherhood the way I imagined it.
I know I can have children. With the right medical care and support, my children might not even feel the impact of my condition. But I know how hard it could be mentally to constantly wonder if my body can keep up. How would I stay positive if breastfeeding made my neck sore? How would I deal with needing help with something society has taught women should come naturally?
That is where being a woman makes this conflict particularly complicated. I am 27, and I feel a very strong desire to have a baby. Sometimes it feels almost physical, like my hormones are screaming at me that this is what I am supposed to want.
Meeting expectations
MG also affects my ability to meet expectations. Women are often expected to carry more emotional and practical responsibility for a family, prioritize children, take care of the home, and sometimes put their careers second. If I ever become a mother, those expectations will probably fall more heavily on me than on the father. When your body is already unreliable, they feel even heavier.
MG has taken away so many things I associate with femininity — being fashionable, feeling comfortable in my body, feeling strong, and feeling in control of myself.
But I can be a woman without fitting into society’s box. I can be ambitious, want a family, need help, and still be strong. I can have a body that sometimes fails me and still feel at home in it.
So yes, sometimes being a woman with MG feels unfair. But I love being a woman. And I am taking back control of my femininity from MG. Just watch me.
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.
geoff carr
Like everyone else your experience is different, MG pays no heed to gender or lifestyle everyone is challenged in a thousand different ways.