What do you want people to know about MS?

Last updated: June 2016

Explaining what it's like to live with multiple sclerosis can often be difficult...and frustrating.  We recently asked our Facebook community what they wanted others to know about MS.  With well over 300 comments, here are some of the most common responses:

MS is unpredictable

  • No two people progress the same – it’s not one size fits all
  • My symptoms can change on a daily or sometimes hourly basis
  • It can literally & figuratively knock you off your feet at anytime
  • MS is like a box of chocolates you never what's in it until you get it
  • It’s a roller coaster...you have ups and downs, twists and turns, except it is never fun
  • MS tries to steal your self worth every day by stealing little things you could do the day before
  • Just because yesterday was a bad day doesn't mean today will be

MS is real – it’s not an excuse

  • This is not something I chose
  • It’s out of my control
  • I’m not faking it
  • I'm not being a hypochondriac or lazy, I just hurt & need to rest
  • MS is exhausting and can cause extreme fatigue and horrific pain

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MS is not a death sentence  (and it's not contagious!) 

  • This is my struggle and what makes me stronger
  • MS is not fatal, and isn't always debilitating
  • It doesn't change who you are, just what you can do
  • It’s a terribly frightening diagnosis to receive. But, with time and education, it's not the end of the world

MS can be invisible

  • I may look fine on the outside but feel terrible on the inside
  • MS makes you appear somewhat normal on the outside, but wreaks havoc on the inside
  • Others can't necessarily see our limits, as we see and feel them and they can't push us past them.

MS can sometimes be stressful and depressing

  • Slowly and quietly takes away our mobility, our cognitive thinking, and our dignity
  • It’s unbelievably hard to live with -mentally physically and emotionally

MS is a constant battle – for everyone

  • It’s on my mind even when I feel well
  • MS is something you think about every day; there is never a break
  • It’s devastating  - it is not just to the victim but the whole family has the disease
  • MS requires those who love us to be open minded with great big hearts

MS still has no cure

  • MS can't be fixed with the miracle potion you are selling
  • We need research for treatment and a cure

Tell us - What do you want others to know about life with MS? 

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