smile

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 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 many days they are also spent in tears. MS isn’t the smiling face you see in brochures or the victorious athlete crossing the finish line in the advertisements. It’s everyday people like me facing weakness, cognitive difficulties, bladder problems, tremors, vision troubles, unforgiving fatigue, 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 people to know about the struggles and the problems we face. 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.

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 matters. That just a simple “I’m here to help you any way I can” matters. That listening to our tear filled emotional breakdowns 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, cry, then wipe your tears, hold you head up and conquer the day. You may get weary in the fight but even on your worst days you are still fighting.

Never doubt, even for a minute, your importance or your value. 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

 





9 replies
  1. Mary
    Mary says:

    What an enjoyable read. …
    each and everyone of your words. …
    Great to know I am not alone. ….
    Thanks ye made my day 😀

    Reply
  2. Peggy Wills
    Peggy Wills says:

    Thanks again! I get so angry with those ads and the fact that they are not helping. Glad to see Selma Blair show the world what’s happening with MS.

    Reply
  3. Patricia
    Patricia says:

    I read every one of POSITIVE LIVING so my husband and I can understand exactly what our daughter experiences. Your articles are very helpful for us to understand what MS does.

    Reply
  4. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope it’s amazing that there are people who do care about us and do help. We should be thankful for them and them and not be judgmental of the other ones, so they aren’t judgmental of us.

    Reply
  5. JOANNE KRUIS
    JOANNE KRUIS says:

    My daughter was diagnosed at 29, she’s 34 now. My son is 31 and just diagnosed also. It’s been a rough couple of months waiting for the test results. Scott hates needles, his sister, Rebecca told him to suck it up that’s life now. I am grateful that they have each other and can joke about having scooter races when the time comes. Thanks for being real, having this site for us to come to.

    Reply
  6. Jan
    Jan says:

    Thank you once again Penelope for your insight on MS. My husband and I are moving in the fall because we found caring doctors who know so much about MS in another STATE!!! They listen to me and have helped me so much this past year. The traveling is getting too much for me….so moving to be near those wonderful doctors.
    Many Blessings to all, Jan🥰

    Reply
  7. Katie
    Katie says:

    Thanks for putting my thoughts into words! I recently had another mri scan to add to all the others over the years.Just to add an uptick pic of my ‘Swiss cheese’ brain.I did laugh to myself when people said oh right how did you get in what will they do now? My answer-well nothing .I will just plod along with the meds .It showed me again that people have no idea what a chronic illness is.Anyway thanks for your words when they pop up in my inbox i sit here at school waiting for my daughter to emerge and then find some non existent energy to cook supper!!!😀

    Reply

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