What You See of This MS Warrior Is Just the Tip of the Iceberg

What You See of This MS Warrior Is Just the Tip of the Iceberg

Jennifer Silver Linings
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.

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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.

10 comments

  1. Russ Stumman says:

    enjoy those moments….for we are in quicksand….protect yourself, people will not understand because they are busy, scared and may feel that a contagion factor could be involved…be selfish…if explained on their level they should understand your own experience with symptoms….for me at this point I’m very selfish, sorry bad day….(they all are to some extent…..as Ms Kahn said in blazing saddles….I’m just to damn tired…sorry, I paraphase)…

  2. Rashmi Jose says:

    Wow…. You just put into words, what l feel and do…. Thanks for this article. Made me feel normal, we all do it…. life goes on…. but to remain positive is s struggle we face on a daily basis.

  3. Jennifer Scott- Kapusty says:

    THIS IS ME!!!!!!
    I cannot believe it – you just wrote about me. My name is Jenn with 2 N’s and we have golden retrievers but the words you wrote describe my MS anonymity, my invisible illness and my need to not be identified as ‘Jenn with MS’.
    Thank you.

  4. Cyndi says:

    Thanks Jennifer. I too savor those 90 minutes of “being me”. As you so aptly title your column, it is those silver linings that make my days.

  5. Margo Schappell says:

    Thank for writing my story too. 😊 You are right…sometimes it is such a struggle to just manage to get out of bed and be as active as you are expected to be. When you are perceived as healthy and able to do the activities that others expect from you…you try…and sometimes you succeed…and other times it takes all your will power to not say “ENOUGH IS ENOUGH”.
    It is hard when you are in the progressive stage to sometimes be optimistic about the future. I…like you…try to be social and friendly and optimistic. I…like you…look like I am healthy when others see me. I…like you…live ONE DAY AT A TIME!

  6. David K Sawyer says:

    I can relate to all you say but I also take pride in wearing shirts that advertise that “I have MS”. Shirts that say “MS gets on my nerves” or “Stronger than MS” or “the only good thing about MS is that Zombies don’t want my brain”.
    I had no clue what it meant to suffer until diagnosed with PPMS 2 years ago. I want the public to better understand why I use a walker or get tired or look like crap. If every person suffering MS advertised, I believe we would benefit from educating the public.

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