Community Thoughts: What MS Means to Me

MS means different things to different people. So we asked our Facebook community: what single word or phrase sums up what MS means to you? Over 150 people were kind enough to share their thoughts. Here’s what our community had to say…

To sum it up in one word, MS to me is…

  • Unpredictable
  • Cruel
  • Frustrating
  • Crap
  • Perseverance
  • Debilitating
  • Frightening
  • Torture
  • MonSter
  • Tiring
  • Scary
  • Uggghhh!
  • Blurriness
  • Changes
  • Balance, I can deal with a lot but if you fall over often it kinda keeps you home.
  • PAIN
  • Re-direction
  • Fatigue
  • Strength. Because you need it more than ever before; feel like you never have enough; but, end up with more than you ever thought possible.
  • Hopelessness
  • Traumatic
  • Debilitating
  • Exhausting
  • Worry
  • Horrible
  • Challenging
  • Aggravation
  • LOSS…of who I once was
  • Limiting
  • Money
  • Strive
  • Sad
  • Horrible
  • Compromising
  • Menacing
  • Hope
  • Dizzy
  • Inconvenient!
  • Disabling
  • Dependent
  • Careless
  • Pain & Suffering
  • Selfish!
  • Confusing
  • Weakness
  • Uncontrollable
  • Schizo
  • Detour
  • Life changing
  • Everchanging
  • My siblings
  • Unknown
  • Doubt
  • Stressful
  • Loss
  • Misunderstood Multiple Sclerosis Survivor MMSS
  • Infuriating
  • Blows
  • Hell
  • Tired
  • Cruel Joke
  • Unpredictable nightmare
  • Insidious!!!!!!!
  • Determined
  • Mess
  • Russian Roulette
  • Uncertainty
  • Certain death
  • Multiple Strangeness
  • Game changer


To sum it up in a single phrase, MS to me is…

  • You just never know how you will feel at any moment.
  • Praise God because He’s got me!
  • Strive and Survive
  • A BIG P.I.M.A.
  • “You can’t control the wind but you can adjust the sails”.
  • I wouldn’t have picked this but I’m not going to let it ruin my life.
  • Don’t give up! God bless us all!
  • Find a cure….
  • Loss of me
  • My disease has a mind of its own. I zig and it zags.
  • Every day is different. Some days I just can’t win.
  • Take it one day at a time and pray for the best.
  • I continue to fundraise to find a cure for all of us!
  • It makes me a MeSs!!!!
  • Pain in the ***!
  • Forced into poverty and loneliness!
  • Keep trying
  • Always feel like I’m walking in 4 feet of water
  • Challenge to thrive
  • Making it through the pain….to go another day….
  • Fear of what’s to come
  • There is no peace inside me, god help us
  • Total life changer
  • A force to be reckoned with-with few definites sadly…
  • Knocked to my knees – although if this literally happened we know I wouldn’t be able to get up on my own.
  • Robs you of your life!
  • Keep on keepin’ on!
  • It’s trying!
  • Always on my mind
  • It sucks
  • Cruel trick of nature
  • I’ve already been sentenced to hell!
  • Catastrophic agony with a side of pain and cant breathe thrown in. Oh yeah and debt
  • Different problem every day
  • Sucks the life out of the family
  • At its mercy
  • Can’t stand the PAIN!!!
  • My husband has MS and he says it’s like playing baseball to the rules of hockey.
  • I want my life back
  • Grateful… for all I can still do
  • I don’t think there is a word that can explain my MS.

How about you? What one word or phrase explains what MS means to you? Please share in the comments. 

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