Multiple Sclerosis isn’t the smiling face you see in brochures

As a kid people would ask me, “what do you want to be when you grow up?”

My answer would change often, but I would mostly respond with Teacher, Scientist, Minister or Musician. Never once did I even think of saying I want to be a disabled person living with a chronic illness. That was never even a thought.

But now, after multiple sclerosis, life is different. I’m no longer the invincible, untouchable kid I once was. I grew up and life became real.

You may see pictures of me smiling, but the truth is my nights are also spent crying. That’s right, MS isn’t the smiling face you see in those brochures or the victorious athlete crossing the finish line in those advertisements. It’s everyday people like you and me facing weakness, cognitive difficulties, bladder problems, tremors and numb body parts.

I want the truth about MS to be seen by the world. I want to hear about people with MS that are facing hell, yet making it. That’s real life with MS.

I want to see the struggle. I want to know about the problems. I want to meet the courageous, the brave, the unstoppable, the true warriors.

I want to hear how lives are being lived in spite of a horrible disease.

I want the world to know about the sleepless nights we face, the embarrassing moments we endure and the emotional chaos we go through every single day.

The world doesn’t need any more brochures covered in rainbows and smiles. Sure, we smile and enjoy life in spite of our disease, but there is a lot hidden behind our smiles that the world needs to know about.

To the advertisers, the drug companies, and the TV producers: Don’t cover up our struggle. We’ve been through too much, come through hell too many times, to have our battle scars hidden away just to make a few people more comfortable with the effects of MS. We aren’t comfortable so they shouldn’t be either.

To the doctors and nurses: remember that MS isn’t easy. That the things you say, the way you help, the care you give really does matter. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdown really does help. That even though you may feel helpless in coming up with a solution to ease our pain in the short time you see us, we face those same fears and feelings every moment of every day. Please be patient with us, your patients. Sometimes you are the only ones we talk to about what we are going through.

In a perfect world, MS wouldn’t exist. There would be no pain, fears, difficulties or struggles. But we live in a world filled with brokenness. It’s okay to cry, fall apart and actually feel afraid. That’s part of being human. That’s a part of living.

Allow yourself to feel, get angry if you need to, cry if you must, then wipe your tears, hold you head up and conquer the day. You are a warrior that may be weary in the fight, but even on your worst days you are still fighting.

Never doubt, even for a minute, that you are special. You are amazingly special and incredibly important. Hold your head high today. You got this!

Dare to Be
When a new day begins, dare to smile gratefully.
When there is darkness, dare to be the first to shine a light.
When there is injustice, dare to be the first to condemn it.
When something seems difficult, dare to do it anyway.
When life seems to beat you down, dare to fight back.
When there seems to be no hope, dare to find some.
When you’re feeling tired, dare to keep going.
When times are tough, dare to be tougher.
When love hurts you, dare to love again.
When someone is hurting, dare to help them heal.
When another is lost, dare to help them find the way.
When a friend falls, dare to be the first to extend a hand.
When you cross paths with another, dare to make them smile.
When you feel great, dare to help someone else feel great too.
When the day has ended, dare to feel as you’ve done your best.
Dare to be the best you can –
At all times, Dare to be!
― Steve Maraboli

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

62 replies
  1. Aileen Brown
    Aileen Brown says:

    Lucky in UK that we don’t get the drug ads have to depend on our MS neurologist and nurse and in my case both are brilliant and yes I do look well most of the time pity the inside didn’t know what the outside was doing lol

  2. Christine Lever
    Christine Lever says:

    So very true. I feel for us all. Last night and the early hours of this morning I was angry, sad, in tears because the pain in my legs, hips and lower spine was almost unbearable, and the intense freezing/burning/fizzing all down the front of my left leg from groin to ankle was just as unbearable. But I had to push through like we all do, the dog needed to go out to pee at 6:40 this morning then he and the cat started the morning chorus for breakfast. I’d like to sleep right through the night just once and wake to realise there was no pain, but I can’t see that happening. I too just push all the pain as far away from my consciousness as possible and get on with the days tasks. People tell us there’s so many medications for us to take to help our MS than there has ever been but I feel like it falls on deaf ears when I say the side effects are too risky, it’s not like taking paracetamol. I’m on Tysabri now and I hate it. The only medication that didn’t give me bad side effects was Tecfidera, but it didn’t work at all…I got new lesions whilst on it. But I’m still smiling, sometimes through gritted teeth but never the less smiling.

  3. Kelli Jaynes
    Kelli Jaynes says:

    Thank you for reminding me that it’s ok to cry. Staying positive all the time is exhausting. I try to keep that “smiling face” of MS on when around other people so they don’t feel uncomfortable. But I also believe my attitude helps me stay positive. But when trying to stay positive all the time, I feel guilty when I need to cry. Your posts remind me that the underlying feelings are normal and ok. Thank you!

  4. Beth Genicola
    Beth Genicola says:

    I can’t stand the advertisements that are put out for our medication for MS. Yes they may educate the person with multiple sclerosis about that medication but they do not educate the real world about MS

  5. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    I have had a bad day yesterday when my bowel just exploded after a day of messing me up psychically then made it real. But I have been there before and knew what to do. After cleaning up I sat down and tried not to let the day ruin me. After the holiday we had to the south west of our island I didn’t expect this to happen again. However I understand it is MS telling me off for almost leaving it on the boat.
    I am better now and have a lot more to think about listening to and reacting better to the things that affect my body.

  6. Marian Fuller
    Marian Fuller says:

    Penelope, I am always
    Anxious to read your words of wisdom and encouragement, for all of us whom have M. S.
    I wish that more people, without This, would be more educated as to what all this disease entails.
    Nobody can “””SEE””
    Multiple Sclerosis.
    “BUT,….YOU LOOK “””SO GOOD”””!!!
    I hear this a lot.
    I am glad that I am along side of all OF YOU, that are FIGHTERS, like I, AGAINST
    This “ugly disease”!!!
    (My Surgeon’s description

  7. Annette Jolly
    Annette Jolly says:

    Totally agree. Im not smiiling tonight because I’m a bit emotional. I ordered a mobility scooter today. It’s a big thing for me to finally have to admit that in some instances I need it. I know deep down that it will make me more independent! Biut it’s a big decision for me. Anyone else feel like that?

    • Michelle Price
      Michelle Price says:

      Definitely . My daughter brought me a walker and I had to take it on my first cruise. I was embarrassed at only 46 to use one but it’s made life a lot easier

    • Stephanie Culkin
      Stephanie Culkin says:

      I felt exactly the same way when I got my first wheelchair and then my scooter. I felt I’d given in to my MS but what a difference they made to my life! But take it easy on your scooter, especially when you’re in a store, not all of them make allowances for them!

    • Annette Jolly
      Annette Jolly says:

      Thanks Michelle and Stephanie.Think I’ve got my head round it now. Was feeling a bit negative about it, bit now feel more positive.Good to know it’s not just me who feels like that !

  8. Cynthia Trombetti
    Cynthia Trombetti says:

    I had a wedding to go to bought the outfit had my hair appointment rested all week well needles to say I’m on the couch worried that they will be mad because I sad yes to the invitation

    • Tarzi
      Tarzi says:

      Don’t care what others think. They’ll never fully understand just like we msers don’t fully get it. We have enough to worry about!

  9. David Wyles
    David Wyles says:

    To my Lassie you do look so beautiful a wish you wouldn’t let it control some things that you let it your so stronger than you

  10. Chris W
    Chris W says:

    Thank you again for your inspiring words! Had an interesting conversation with some fellow warriors this morning. So much is hidden, we need to speak truth, but not drown and only talk about the hard stuff! With MS or not, no one wants to hang out with Debbi Downer! Having a supportive group of friends and positive thoughts has helped me deal with the not so positive parts of MS! Thanks again for all you do for us through your writing!!

  11. Phil McCraw
    Phil McCraw says:

    Thanks again for your blog posts. I have PPMS and all I hear is you look good. It’s the world view of people who aren’t educated about MS.

    • Mel Palmer
      Mel Palmer says:

      I hate to tell you then, but MS has improved my quality of life 100%. If I didn’t have it, I’d still be working some job I hated, that paid the bills. I wasn’t living before this, I was just surviving. The last ten years have been the best (and some of the worst, yes, but the best far outnumber the worst) of my life. I’m living my dreams.

  12. Shanna Kinser
    Shanna Kinser says:

    Those brochures are such nonsense. If you really press the MS specialists at major teaching and research centers, they’ll tell you the truth. The current drugs for most people with relapsing forms of MS are either safe and not very effective long-term. Or effective and not particularly safe (think PML, liver and kidney disease, white cell count abnormalities). I finally said goodbye to the hype and the drugs. Control my symptoms, exercise, eat well, and get enough sleep. I got a service dog to get me out of the house more often. I feel better off those drugs. Everyone is different and I’m not saying everyone ought to stop their MS drugs. It’s just don’t get caught up in the heavy marketing by big pharma. They do that with most prescription drugs. The potentially more dangerous, the harder they market them. Think about MS and neurology focused magazines. The glossy ads are everywhere. MS Walks? Drug reps with free cheap pens, bags, water bottles. Read, though, the fine print. Sorry, guys. Just a pet peeve. I’m tired of being a marketing target because my illness is a $$$ maker.

    • Deborah Kephart
      Deborah Kephart says:

      They do prescribe​ them for the money. I have NMO and was prescribed MS drugs which are not recommend for NMO. I got so much worse. But as you said they are money makers!!

  13. Mimi White
    Mimi White says:

    I really hate the weird pain. I do a lot of yoga to keep flexible and try to stay active. But there are days I struggle to make myself move. I refuse to give in to this disease and even though I have my crying times I keep positive. Attitude is everything and life is full of obstacles. I believe in the fake it till you make it philosophy. I teach art to K-5 grades. Some days it is a real struggle to move and get to work but it is worth it every time. Because I am still doing what I love …and with this disease I value every day I get to do those things pain or no pain.

    • Beth Klug Ray
      Beth Klug Ray says:

      I agree with you 200% as I comment at 3:30 am. Can’t wait until morning so I actually can get some sleep. Painful night, and cramping is the easy part.

  14. Mary Devereux
    Mary Devereux says:

    So true so me if I hear of one more person who can run a marathon or climb a mountain why can’t they show the real effect of ms fair play to those who can do all those things I wish I was one of them but I am not

    • Bonnie Burkley
      Bonnie Burkley says:

      I so agree! I was dx 1980…37 yrs. with MS….I really want to choke the next person who tells me…I should take the drug they show on TV ????? Listen up, Buttercup, taking a drug….it’s not a CURE….it’s a bandaid!!!! Thank you, Mary!! Rant over, Pen!!❤️❤️🙏✨

  15. Joy H
    Joy H says:

    Always love reading your posts! It’s true that, even with the most understanding, supportive family and friends, the only people who truly understand this nasty disease are others who are fighting it.

  16. Joanne Chapman
    Joanne Chapman says:

    Well said. I got asked to smile and support the “kiss” UK MS Society campaign. To be honest, I couldn’t as although we probably want to “kiss” MS goodbye I’ve had such a rubbish May, every single day I couldn’t. I wrote about it instead on my blog Thank you for sharing.

  17. Crestifer Hughes
    Crestifer Hughes says:

    you are one of the strongest people i’ve ever seen.

    your posts inspire so many of us, and we all know what you are going through. despite your challenges, you still find the time and energy to run your site and make these posts.

    you are awesome penelope. thank you for all you do for this community.

  18. Beth Ann Baumgartner
    Beth Ann Baumgartner says:

    So very true. I spent last night again in horrible pain. Though when at Great Nieces Softball Game, no one could see my suffering. After the sitting, how it is so difficult to get up and get moving. Or how it is difficult to get into vehicle, etc. They only see the smiling face. We are so good to hide the facts.

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