Skip to Accessibility Tools Skip to Content Skip to Footer

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. 


  • Azjackie
    2 years ago

    MS means to me a tearfully painful slow death. Just when I think I’m o.k. or I can do this for the moment, I fall and get dizzy. By this time too weak to stand so I end up crawling to lay in the A/C pitying myself remembering more what I can not do or how much was stolen from me. Yep I would say MS is torture.

  • alchemie
    4 years ago

    Okay, so I’m the one that came up with, “MS sucks but zombies don’t want to eat my brain”. That was awhile back but a couple of years ago, I also came up with: “Living with MS is like a tornado. It’s unpredictable and can be devastating.” *shrug* I do live in Tornado Alley. Just sayin’.

  • Jess
    4 years ago

    About 95% of everyone’s answers, YES. ME TOO!

  • Mikacee81
    4 years ago


  • Jonathan
    4 years ago

    MS sucks, yes, but I’m glad to be here. My word is:

  • boomer51
    4 years ago

    I treat MS like an enemy, always ready to attack my body and take away anything I give in to it. Therefore I have learned to adapt, persevere and become stronger.

  • erin
    4 years ago

    Every one of these comments are very real. Some days I am very happy to live in denial and pretend that this doesn’t exist. And then some days I try to turn the radio dial in my car and my arm is so heavy that it requires effort beyond normal and then I can’t feel the dial in my fingers. As a musician (my career), I am frustrated — But I know that God is with me – blessing me in spite of myself. 🙂

  • wheels460
    4 years ago

    Just a disease, better than some worse than others. Life only has one guarantee, one that I am unwilling to accept until I have too.

  • hadel
    4 years ago

    Guilty for the ever changing burden my ever changing symptoms have on my husband today and in the future.

  • Kari wright
    4 years ago

    It has changed my life completely and I wish I had my old life back. But, on a positive note, it makes me appreciate the things I have and the people I have in my life that are all very supportive. My husband and son are what keeps me going every day and whom i love with all of my heart and soul! Also it took 3 times, but I’ve found the best neurologist where I live and him as well as his daughter are truly compassionate with me and all of their patients. There is always the fear of the unknown and what could happen next, but my faith in God has become so much stronger and He will get me through this no matter what MS has to give me! !

  • Poll