Alone in a Room Full of People

No one could possibly understand this. This disease is so elusive, yet so real to me.

Everybody with this disease seems to have a different set of symptoms, different age of onset or different way of coping. Fifteen years ago, I felt completely alone. No one I knew had MS, and I certainly wasn’t sure how to explain my illness or its symptoms I was dealing with.

At first, people would tell me, “it’s all in your head.” I’d feel hurt and would mutter under my breath, “well, yes! I have multiple sclerosis, it is all in my head!”

As confusing as this disease is, I am truly blessed to not be facing this alone. Since I was diagnosed, four co-workers have had MS touch their lives very personally. A friend at church was diagnosed a month after I was, and yet another very close friend three years after me. We all have MS but have completely different symptoms. I guess because I am a nurse, I more readily share my health issues; I wear my heart on my sleeve, and my basic instinct is to help others.

MS affects my vision. In struggling with this, I am alone. No one can feel the way my eyes get tired and unfocused… but I have adjusted. I rest when I can. I cry sometimes, yet I know I can rely on my MS friends.

With these folks, the “M’ and the “S” do not necessarily stand for multiple sclerosis. No, I believe they stand for much support. These “MS” friends are there when I need them, or when they need me. If we ask each other, “how are you feeling?” it’s a deeper question when you have this disease. They all understand when I say, “the fatigue monster has come calling today!” They know very personally what that means. Tired is tired, but MS tired? Now that’s something else.

We “MS” people keep at it. We all keep going. We are truly not alone. We understand that this is not a club that most people want to join, but that we did not have a choice. We can, however, choose our attitude toward this. We offer much support to each other and for each other. You, whose eyes are reading these words, are not alone either. Much Support can and will come your way in this blog room full of MS people!
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Nancy

Nancy Roberts

Nancy Roberts is a registered nurse, currently working in the operating room. She is a mother of two grown children and lives in Woodbury, Minnesota. She has lived with multiple sclerosis for nearly 15 years.

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    10 Comments

  • Erika James-Jackson   Aug 15, 2017 2:24 PM
    Thank you Nancy! This is a perfect post...we all need Much Support in one way or another. Yes this disease is tough and certainly keeps you "on your toes" with its unpredictability, however we are strong! Take care and be well.
  • koucla1  Aug 15, 2017 2:28 PM
    When I was diagnosed with MS I couldn't walk and the doc pretty much said I would never walk again. That was many years ago and many steps ago and the support system we have now is great! Your story is filled with hope and conviction and courage. Keep spreading the word... MS is not the end of your journey... It is just the scenery.
  • Maria Wieand   Aug 15, 2017 2:54 PM
    Thanks for sharing this blog, when I started to read this I thought it was written by me and I was reading my day to day experiences. Glad I am not alone.
  • Judith Bourland   Aug 16, 2017 10:03 AM
    Beautifully said, Nancy! And so true. Supporting each other and knowing you have people who do support and understand the best they can has to be helpful to you. You are not alone as you say. Keep writing!!
  • delightedhands  Aug 16, 2017 12:08 PM
    My younger brother was diagnosed several years before me....I sure needed his support that first year.... His positive attitude set the stage for me. This was a great post, thank you!
  • kwec7744  Aug 23, 2017 11:45 PM
    Hope that you are coping with your MS challengers. To play in the MS game, you don't even have to throw a double six. However, the membership fees are a little costly.
  • Valtx17  Aug 28, 2017 8:48 PM
    I can totally relate, there is often a sense of feeling alone. At work I often wonder if co-workers can pick up on the fact that there are days I short circuit. My main issue is dizziness and feeling my legs tired. I try to be positive and when friends / family ask how are things, I chose to say everything is okay. Your comment about people saying it's all in our heads. I think how ironic it literally is all in my head, the disease causing my ailments. Thanks for sharing.... learning as I go along. New MS diagnosis.
  • Mounina Bouna Aly   Sep 1, 2017 5:38 PM
    i love the new association for the letter MS
    it is true we are never alone in this universe
    it is so true every manifestation of the disease is so unique as we all are
    i share my own story of healing MS to inspire
    i believe today MS is a healing gift
    https://mouninabounaaly.com/about/
    love
    mounina
  • Xavier Martinez   Sep 3, 2017 1:46 AM
    I need some help I been having symptoms of MS but I was told by my doctor that my MRI on my head came back normal I continue to have symptoms of MS would it be a good reason for my doctor to order a MRI on my spinal cord or do a spinal tap
  • Heidi Weber   Sep 4, 2017 3:51 AM
    I am alone in a full room of people. I am alone on a farm with a loving family. I sit in front of my computer or make art. I WOULD LIKE TO DONATE AN ARTWORK TO OUR FOUDATION: " CHRIST WITH MS". I do not know how to proceed and go on with my wish.