What I Hate Most About Having Multiple Sclerosis

It wasn’t the diagnosis itself that had the greatest impact on me and my life.  I made adjustments to how I do things, figured out new ways to accomplish what needed to be done and flowed with the definition of the new me.  What I struggled with from the get go (and still do) is the doubt.  The voice in my head that jumped to the forefront, frequently overshadowing rational thoughts.  For the first time I began to worry about whether or not I could be who I wanted to be.

I grew up always believing that I could do whatever I set my sights on.  My parents nourished this belief, supporting me in whatever direction I decided to head.  Going off to college, spending a semester abroad, picking up and moving across the country, taking my first job, having and raising three kids – I never doubted that I could do it, that I could achieve my goals and ambitions.

Until the diagnosis.  Those first years, with so many major changes to my physical abilities and redefining who I was and how I got things done, I faced it all with the attitude of “it is what it is.”  But what also arrived was doubt.  A nagging and relentless voice that questioned every day, all the time, whether I would be able to do something.  The simplest of tasks – a trip to the grocery store – increased the voice’s volume – chanting the reminder “I have MS, I have MS.”  In chorus with this broadcast was the questions “Can I make it?”  “Will I have enough energy to get through the errand?” “Will I fall again this time?”  “What if I pee myself?”  The apprehension at times almost overwhelming.


The simple fact is that most of the time I can make it. I dredge up enough energy. I might fall, but I get back up, and a little pee hasn’t killed me yet.  These things (these new “normals”) aren’t what I hate the most; that I take issue with.  I hate that I question myself; my capability to do things, to believe in myself and my ability to succeed.  To be strong and independent and not feel that I need to have others there to help me at all times.

A lot has happened in my life over the past few years (Disease & Divorce: Did MS End My Marriage) and I am in a better place than I ever imagined.  I have three amazing children, a man that is grounded, goofy and kind who loves me unconditionally, a place that feels like home and a budding career that I am passionate about. The doubt is still there, but the voice has quieted a bit.  There are now trips to the store that I don’t think “I have MS” or worry about falling. Granted the pee thing is ALWAYS a possibility but even that seems to be a bit a little less frequent these days.

I can do a wonderful job of keeping myself up at night – allowing the voice back in and the doubt is quick to take over again.  It’s a simple given that I might wake up tomorrow in the midst of a relapse – where all the steps forward that I have made disappear and I am once again filled with doubt.  But for the moment, while I can, I am going to do my best to shut the stupid voice up and let myself believe again.  After all, anything is possible!

Thinking my new mantra should be…






8 Replies to “What I Hate Most About Having Multiple Sclerosis”

  1. I am just so so tired of feeling as a victim of this damn MS
    I actually have a superior I Q,
    Earned a full scholarship , never paid a dime to study
    By 23 I have my degree
    Applied for a job I wanted and got it
    In a year I got promoted
    Some were jelous I did but I learned to easily and quickly . I did not want to upset any one
    I just did my job and learned easily
    But any way
    Then I traveled to Europe, but my house and other positive things
    Then at 29 ended up in the ER
    IN 10 DAYS I was told “you have MS”
    Kept on an one and 27 years later
    Here I am . My life in pieces
    I pitty myself and I miss me
    The intelligent beautiful woman I was and I am tired of living in daily pain and the stupid MRIs
    I am tired , very tired

    1. I think so many of us can understand the tired part. It is constant and relentless and just doesn’t stop.

      Thanks so much for sharing and venting. We all need to do that from time to time:)

  2. Tx u for articulating that. I feel the same. There are the few odd days that my fear worry/obsessing about.What’s next ..when or how it will hit me?….outweigh/& areworse, all consuming than the MS itself that day. Rancid disease I wish u and all health.

    1. Thanks for stopping by and sharing! I think they many of us have those damn worrying & doubting thoughts. It is better for me if I can try and stay busy (even if sedentary on bad leg days) because they does seem to shut the voice up a bit:)


    1. Thanks Jamie!
      Just read your post on “bladder issues” and it reminded me of the post I wrote 3 years ago
      Damn it! IF I Had Only Known: Adult Diapers Done Right! Good times:)

    1. 🙂 Yup. I do find myself frequently repeating my first docs words of wisdom… this is NOT an OH FUCK moment – it’s an OH DAMN moment in life. I realize that others may have their own opinion of this but it really helped set me straight from the get go to appreciate what I DO have and try and not miss what I don’t:)


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