Have you ever seen an iceberg? The prism of packed ice illuminates the surrounding sea. The part you can see is beautiful, yet most of its mass lies beneath the surface. You cannot know what you cannot see. Therefore, your perception is based on what is visible.
What if that perception is inaccurate?
People see my façade. I make a concerted effort to look well-groomed and happy regardless of how poorly I feel. I smile and make small talk when I would rather keep to myself. I brush my hair into a neat ponytail when I cannot shower. I wear a cap with glasses to disguise my fatigue.
I look vastly different from how I feel. Some days the disparity is greater than others, but the variance is omnipresent. Sometimes I cannot put on a happy face. On those days I stay home.
I cannot fault people for making assumptions based on the tip of my iceberg. This is all they see and I am to blame for perpetuating this inaccurate narrative. Why do I do this? I do this to help myself feel normal when most days I feel anything but. I do this to keep my identity free from disease-identifying monikers. I do this so I am just “Jenn” as opposed to “Jenn with MS.” I do this so I am not associated with negativity. I do this because I want to own wellness, and so much of what and who we are is a self-fulfilling prophecy.
I do this to survive.
My illness is invisible to most, and I am OK with that. Those who know me understand what lies beneath. They notice that my drop foot is more pronounced and recognize the increased fatigue in my eyes. If asked, I will respond with honesty. I prefer those who do not know me to see me as their perception dictates. If asked about anything specifically, however, I will answer honestly.
I am increasingly more protective of my world with MS. I invite few people to witness its effect on my daily life. Those few are family and close friends, a sacred circle of those I trust. They know more about what lies beneath than the tip that is visible to everyone. I prefer to be appreciated for my volunteering with dogs or my writing abilities than to be pitied for having MS.
As my disease has progressed, so too has my desire for MS anonymity. I am not ashamed of this disease — quite the contrary. I am proud of my life with MS and the myriad incredible warriors who travel with me on this journey. It is an honor to be among you, my readers.
This morning, I went out to run errands in my requisite ponytail and sunglasses. I smiled when spoken to and said, “Good morning,” to those I met. After 90 minutes, I knew my façade was beginning to crack. My eyes grew heavy, and my steps began to falter. Instead of giving a kind salutation to passersby, I wanted to growl. Heeding the all-too-familiar signs that my day was complete, I headed home.
But for those 90 minutes, I was me. And I shone.
Note: Multiple Sclerosis News Today 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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