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What do you want people to know about MS?

What do you want people to know about MS?

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

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? 


  • giraffe516
    5 years ago

    Yes I may need help but please ask first. You opening the door is great but if I am holding onto it I can’t move fast enough and will fall down. Also I too hate apologies when people ask what is wrong with me. Yes it sucks! I hate it! I miss out on a lot due to my mobility issues but please don’t apologize.

  • fedupandconfused
    5 years ago

    Excellently written and to the point. I agree with it 100%. The most frustrating thing is if you haven’t got MS you don’t *get* MS. It’s such a contrary illness with one day being X and the next day Y and if we don’t understand it how can we expect others? That’s why sometimes people think it’s imagined or not painful. This article is great it summarises why MS is so conflicting. Thanks for that.

  • gngrbrzl
    5 years ago

    When I come down with anything, be it a cold or a stomach virus, the affects of it are much worse as is the recovery. “Oh you have a cold? Well I do, too. But, because I have MS every joint in my body is rendered immovable rather than just halfway uncooperative and I’m in bed unable to walk.” Extreme, I know…I’m using hyperbole. Haha! 🙂

  • Faith
    6 years ago

    I have progressive ms there are no good days only manageable days. I have awful symptoms everyday all day.

  • north-star
    6 years ago

    The responses are very true, especially please keep your miracle potion!

    I would love to tell people not to push or pull open a door I’m already pushing or pulling. Love the good side of you helping out, but I can’t let go and so I follow the door as you pull it. It’s startling and I sometimes yelp involuntarily and the person is embarrassed and I feel bad for them.

    It’s amazing how many embarrassing things can happen in a day. Non-MS people think I’m upset if I fall or stumble but I’m not. Some days, coping with MS is as much fun as being the long suffering mother of a four year old who’s having a meltdown in the grocery store. I can’t do anything but abide and, as with a four year old, get my MS self home and take a nap.

  • rmdanielsom
    6 years ago

    it IS killing me; literally. one nerve, one section of my spinal cord at a time. i will not die of “old age”. i will die of organ failure because that organ (heart, lungs) will no longer get the nerve impulses to do their job due to the dead nerves/spinal cord killed by the ms.

    i do not want pity, or sympathy; i want a treatment and cure.

  • Pam
    5 years ago

    I agree with you does kill.. just because famous people don’t show the bad side doesn’t mean it isn’t there. the smiley face isn’t real.. its for others benefit to see.

  • grmc
    6 years ago

    MS was a major adjuctment to me, but it has also made me adjust to life with it. I have changed the course of my life to a different way of life. It has opened more doors than it closed. As an activate for the NMSS I have gotten to do things that would have not been possible other wise. It is not an end, but a begining.

  • bkitaly1
    6 years ago

    I could not have said it better, what was written about MS is all true. While I have gotten past the “Why me?” there are days I still so resent what it has done to my brain. Tomato soup is now where once whole tomatoes were.

  • Mare
    6 years ago

    I don’t want pity. I deal with this disease fairly well. I hate it when they say “I’m sorry”!

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