Living with Uncertainty is an MS Superpower

Living with Uncertainty is an MS Superpower

Recent weeks have been filled with enough political drama to last a lifetime. Wherever I go virtually (and now, even in “real life”), ideological division has been amplified to the extreme. Except … when I go to the multiple sclerosis online forum I co-administrate.

Meet the people in my neighborhood

The top posts recently, in summary, at that MS forum on Facebook were a pic collage blending images of making gumbo with uplifting messages and pictures of smiling faces, someone asking calmly about the side effects of Gilenya, an article about caregivers getting necessary sleep to do their good work,  a picture of an MS warrior T-shirt with typography that spells out “I’m fine,” and a John Muir quote: “When one tugs at a single thing in nature, he finds it hitched to the rest of the universe.”

The posts continued: A thoughtful question about choosing Gabapentin or Lyrica, a discussion about inclined bed therapy, an SOS from a patient struggling with orthopedic pain, a post about light therapy for seasonal affective disorder, and a question about differentiating worsening symptoms from relapse.

Notice the lack of hysteria? The positive, problem-solving attitudes? The desire to share information to help others? Even the SOS was written with a sense of humor.

It got me thinking: What is it about being chronically ill that might be useful for surviving these contentious times? What happens when we are diagnosed with multiple sclerosis or any other chronic, debilitating, incurable illness?

Stages of grief

In her book, On Death and Dying, Elizabeth Kübler-Ross identified five stages of grief. These are: Denial, Anger, Bargaining, Depression, and Acceptance

We’ve all been through at least some of these stages. We may have cycled through all five at different times in our lives. Let’s face it: MS does, indeed, suck. It means we go to bed every night wondering what the next day will bring, knowing full well the best and worst answers to that speculation.

Living with multiple sclerosis means living with uncertainty. Some of us are much better at it than others. We all enter this new neighborhood at different times and with different coping mechanisms. There is no right or wrong way as much as there is simply a “way” we take to get through it.

We all have different variations of this snowflake disease, from mild to devastatingly progressive. And the symptoms! Endless variations on a theme of loss, pain and surrender.

Throw in our individuality, and how the disease can circumvent it. Add a touch of uncertainty (“We don’t know what causes it”) and the fact there is no cure. Yet, we all go on living, and surviving, even thriving … as long as we can take ownership of our response to uncertainty.

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.

One comment

  1. Liz says:

    I feel like I could greatly benefit from your forum. I was wondering if it would be possible to maybe get a link to it?

    Thank you so much!

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