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When Shame Was an Unexpected Symptom of My MS

The Mighty logo The Mighty 6/3/2019 Madeleine Cullerton

a silhouette of a person: Silhouette of woman. © The Mighty Silhouette of woman. I’m young, sprightly and fresh-faced. I’m the portrait of health, rosy cheeks and all. Which is why it came as an absolute surprise to my employer when I started having to call in sick from work. It started with one day, then two, until it finally stretched into a full week. I had a multiple sclerosis flare, making for stiff joints, heavy brain fog and blurry vision — but shame ended up being one of the hardest symptoms I had to tackle.

My bosses sent me plaintive texts. My co-workers seemed frustrated when I did come in, wondering at my lack of speed and efficacy. Sometimes I almost wanted to limp merely to get them off my back, as if having some visible symptom might validate my disease.

My initial response was to push harder to “make up” for it and endlessly apologize for my struggles. Even at home I would try to work from bed. I neglected my health in the process, and my situation only got worse when compounded with stress.

All of this pushing was driven by shame. Shame driven by a culture where rest and taking time for oneself is a foreign concept. I had to exercise a different kind of muscle — I had to prioritize having compassion for myself, even when no one else did. Just because my boss did not understand did not mean I had to ignore my own needs.

Video: Selma Blair Gets Candid on Her Battle With MS Diagnosis (E! Online)

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Chronic disease comes in many forms and with many symptoms, some not visible to the eye. When symptoms are invisible, it can be hard to advocate for oneself. It can be uncomfortable explaining those hidden aspects of ourselves to an employer. It takes courage to do so, and ultimately in my experience it is worth it. The more open the communication, the easier it is for the employer to understand where you are coming from. It helps them understand you’re not “faking it.”

In the end, I had to be the one to validate my symptoms, listen to my body and take action on its behalf. I had to be my own advocate and work through the shame to realize I’m of better service to everyone if I’m in good health.

Gallery: This is what it’s like to live with multiple sclerosis (Best Life)

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