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…






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

  1. 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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