Things i Wish People Understood About MS!


Things I Wish People Understood About MS!

You can never really know what someone else is thinking, feeling, wishing or mourning for unless you had a magic potion which allows you to step into their body for a day.

I cannot begin to describe the fear and devastation I felt when I first heard the doctors words “I think you have multiple sclerosis.” Everything I thought I knew, everything I thought I was vanished in a five seconds it took for him to utter those unwanted six words. It is like this for many people whether it be a medical diagnosis, the news of the death of a loved one, or any other life altering events which forever changes the course of your life. 

I could never really explain the utter fear I felt when my vision started to blur and then progressed to complete blackness. I was terrified of being left alone in the world which was dimming to nothingness. I was afraid of being trapped inside my own body not being able to see the faces of my children. The feeling of isolation and claustrophobia threatened to swallow me whole.

I would like people to understand that living with MS is a constant test of faith and courage. The courage to believe that tomorrow things will get better. The faith that no matter what, I will be okay with whatever might come to be. MS is an unpredictable illness and it takes great fortitude to stay strong and fight whatever each new days challenges might be.

I would like people to understand that I do not want them to look at me with pity, amusement or bewilderment if I am not walking with a graceful stride. When I am shopping and have to hold an item three inches from my face to read the label, I wish people would not stare but instead offer to read it for me. 

If I am too tired to go to a preplanned event, I do not want to have to make up excuses or  try to explain how I am just too tired today to even take a shower never-mind going out and have to socialize for a five hour dinner and drinks. 

If I have to take medications for pain, muscle spasms, daily injections to ward off an exacerbation, I do not want to feel guilty for needing pharmaceutical help in my daily fight against MS. Eating healthy, juicing, vitamin supplementation, exercise and meditations some days just may not be enough. It does not mean I am weak of mind or in spirit if I choose to incorporate any means necessary in my life with MS. 

Just because I have MS it doesn’t mean I am no longer a woman who wants to love and be loved. 

I want everyone to know that because of my MS, I have become a strong, positive woman who knows what she wants in life and has learned to appreciate what really matters.

My wish is for everyone living with MS to believe that they are strong enough to quell the MS monster, worthy of being loved unconditionally and to feel gratitude for all the beauty of life  that we are blessed to experience each day we are given. 

MS does not have to mean your life is over, it just means your life is now different than it was yesterday. 

You will adapt.

You will grow.

You will be okay 

When you see me walking down the street, know that I am perfectly me!

Cindy Lee Lothian

August 18, 2013



About Cindy Lee

I'm a writer, mother and lover of life who has learned that my twenty year dance with the disease MS, has given me Multiple Strengths. I write about love, laughter, healing and hope.
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13 Responses to Things i Wish People Understood About MS!

  1. Claire Westgath says:

    Amen to that hunni xxxxxx

  2. Teri Rogers says:

    Cindy, you are awesome! I love reading everything you write. We will be just fine!! God bless you!!

  3. María Magaña says:

    I don’t feel sorry for you Cindy, what I feel is total respect and admiration for you, for the light you are. And also a profund gratefulness for making me think of a better way to cope and deal with life’s challenges. I send you a big hug with love. María Rosa Magaña, Querétaro, México

  4. Sherri Kyle says:

    THANK YOU for saying what is always on my mind

    • Cindy Lee says:

      THanks Sherri! Even though MS differs so widely with each individual, we all share some of the same feelings such as frustration, fear, anger and hopefully hope! Thanks for reading…stay well! xx

  5. Taylor says:

    You go mom! Keep up the good fight.

    Love Taylor

  6. Cindy Lee says:

    I fight for me, you and Jaime and will never stop! I love you, xx

  7. Ginger says:

    So much of that feels like my own thoughts and fears. There is always strength in numbers and having others to talk and journey through this with helps so much. Great letter :)!

    • Cindy Lee says:

      Ginger, it certainly does help to share our experiences so that others living with MS do not feel llike they are alone in their feelings. Thanks for reading and your thoughts. Stay well. Cindy

  8. Catherine Campbell says:

    My Son has M.S. and so does my half Sister. Family and and other people in our lives think that just because one looks nice and seems okay one day that they should feel the same the next hour or the next day etc.They do not understand or realize that in a second everything can change instantly with M.S. Or that if they push themselves symptoms will disappear.

  9. Kay says:

    Thank you for puting in words what I have wanted to tell people for years.

    • Cindy Lee says:

      Hi Kay, for far too long people living with MS have felt they are alone in their feelings. Stay well and thanks for reading and taking the time to comment! Cindy

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