If only the world could see the life we live

You have been through so much lately. You’ve crossed hurdle after hurdle going from one doctor’s appointment to the next. You’ve made your way through danger more than once in the past year alone. You’ve climbed mountains that no one even thought were scalable and yet you overcame the odds. Every day seems to present itself with challenges, but somehow you find a way to get through them.

Admittedly, You don’t always win. You don’t always cross the finish line at the end of the day, but the most important thing is that you never quit. Sometimes you find yourself questioning everything happening in your life. Sometimes the dreaded questions “why me?” and “why now?” run through your thoughts but they never seem to come with definable answers, only more questions.

What do you do when faced with a life of Multiple Sclerosis? Where do you go from here? How are you supposed to function in an able-bodied world that doesn’t seem to understand the complexities of living with MS?

The answer…you just do it!

You drag yourself out of bed each morning exhausted, weary, overwhelmed, and at times feeling completely defeated, but you muddle your way through the day anyway. Some days are better than others. Some days you can walk, other days you can’t. Some days you find yourself laughing, other days even a giggle seems impossible. But you do it anyway.

Today may be one of those impossible, unimaginably difficult days. I won’t lie to you, life with MS is hard. There are surprises around every corner; some good, some bad.

Sadly, a majority of the awareness campaigns for MS don’t actually tell the world how ugly MS can be. They show the smiles and the brave souls walking their way through a 5k with their arms raised in victory, but what about those who can’t walk. Or the ones that have trouble speaking, breathing, eating, seeing or functioning in a so called “normal” world? Why are those people never seen or shown as the face of MS?

Yes, there have been great strides made in helping people manage their MS symptoms and new treatments are being discovered that help slow its progression down—for that I’m enormously thankful—but when is the public going to see that MS isn’t just an “Oh, well it could be worse” kind of disease? When are they going to be shown the reality of what it actually does to a person’s life and body?

My hope is that some day soon people will see the reason we fight every day, but also the pain we endure. That they will understand just how much we overcome on a daily basis. That yes, we may put on a brave face, but deep inside we carry around an uncertainty of how long we will be able to wear our brave.

Every person fighting MS is brave, every one is amazingly strong, and every one is on a journey of uncertainty. We hope for a better tomorrow but we also hope for a world that will truly see MS for what it really is…a chronic progressive disabling neurological disease that has no known cure.

It’s time we let the public see the ugly side of MS and why we so desperately need a cure.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author
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.

44 replies
  1. Heidi Weber
    Heidi Weber says:

    Enjoy the fact that you can make a difference to your own world experience from a different angle than anybody else in the world.

  2. Michelle Brown says:

    I was saying to my husband the other night (we went to dinner to discuss the future/post bad news about my mri and the rate its progressing) and i said although cancer is truly horrifying there is hope…lots of people get cured go into remission…you have at least a chance. With ms there is no chance no hope at the moment.

  3. Andrew Mallory says:

    This is so true, we smile at friends and family and tell them we are doing ok when in reality every day we are fighting a battle just get through and cling on to the ever decreasing bits of our old pre MS life that we can still do because we know tomorrow we may not be able to do those things again. Love your posts, take care and keep fighting!

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

    The is an EXCELLENT movie set in the early 60’s called Go Now. It covers the story of a London bot who played sports and was very good at work, then something happened. He started to lose control of his legs and no one new much about dealing with it. But it does show an ugly side and how he goes through it.
    I am pleased there have been some steps made since then and more knowledge gained.
    It still doesn’t take away the struggles we have over years of dealing with it. But it shows how ignorant some people can be.

  5. Val Hanna says:

    Try sticking me in an article, stuck in bed fo weeks virus, infections, choking and dribbling scared to eat as it’s scary as I’m even choking on saliva. This place and everyone on here are my refuge if anyone asks my smile is on the table I reach for it when anybody comes in. I don’t want to bring any of you down either but this is almost like a secret society of…..My name is and I have MS…confessions.

  6. Jana Morgan
    Jana Morgan says:

    Fantastic article Penelope and says what I am thinking perfectly. Why does every ms article have a smiling person as having ms makes me smile less every day. Most people don’t even vaguely understand what we deal with every day and getting to the letterbox and back with my walker is a major effort. It is a very sad life we lead but we are so strong and keep trying every day. Cheers for every ms sufferer!

  7. Ethel Himel says:

    We the people who has to stay home because of MS don’t get recognition. I for one would love to be part of the walks but a trip to my dr and back and I’m done

  8. Sandra Lorenson Holthe says:

    There should be a reality TV show following an MSer 24/7 showing just how freaking limiting it is in its many ugly ways. I agree, the public doesn’t get the real picture. They don’t see the body that is crawling across the floor because it can’t walk anymore, they often don’t see the body experiencing the many multiple varied dysfunctions. It’s also tough for an MSer to reveal and admit to the ugliness of this disease. Thank you Penelope for continuing to offer your views and insight.

  9. Stacey Mesheau says:

    Almost like we are the only ones who need to cope! There are different levels of MS it maybe hard for your family but we live it. Each day comes with a new deficit.

  10. Pam Oien-Emminger says:

    Every time I see a commercial with a supposedly m.s.er running,swimming,hiking and smiling I feel ticked off! Show the ugly truthful side! Put those of us in a commercial trying to walk with lack of balance, show the tremors, discuss the pain and other issues! Heck I would do a commercial for free just to have the truth of m.s. shown!

    • Ana B Housen says:

      I agree with you Pam , my husband has ppms, just diagnosed August 2015. Our life is a living hell. He can’t walk, no control of bathroom stuff. When he falls it hurts, not funny. According to his dr there is no meds for his type of ms so he just keeps getting worse, ugh

    • Pam Oien-Emminger says:

      I’m so sorry to hear this Ana. Of course it’s hard on him, but also for you as his caretaker. I will be thinking of you both and putting you in my prayers.
      I am in secondary progressive going in to primary progressive. Everyday is such a challenge…but I do my best to take it one day at a time. Not always easy.

  11. Sue Smith says:

    I am a bit unsure of this too. It’s nice to see people doing well but I have broken my ankle twice in 18 months trying to pretend to be ‘normal’.

  12. Cathleen Mulvey says:

    It’s great to keep a positive attitude as much as you can…but it is true that the full “face” of MS is not shown to the rest of the world. With MS having so many silent symptoms, or giving us some ok days when we push ourselves to go public to get done what we need to, often the response is then… but you look so good!

  13. Tina Coonrod-Neal
    Tina Coonrod-Neal says:

    Thank you so much for writing things so effortlessly and so truthfully… As is sit here in the hospital with an IV stuck in my arm because the brochictis bug hit me hard this time. I wish people could understand how hard it is for us to recover or to even function.

  14. Paige Becker says:

    I agree! And I’m so relieved I’m not the only one who feels this way. It’s not inspirational, it’s discouraging to see other MSers running marathons when I can barely walk a block. It doesn’t tell the whole true story of MS. I find the before/after and mountaintop experience narratives to be so unhelpful and inaccurate.

  15. Wendy Aitken says:

    I totally agree!
    MS isn’t a joke or something to smile & giggle about.
    It’s time the world saw some of the ugly, harsh reality of ms too
    Hats off to those brave ms’ers that do the hikes/marathons etc

  16. Pia Reynolds says:

    I really agree! It’s a bit like buying a woman’s magazine full of ‘inspirational’ stories about people who have overcome a million things and now earn fortunes from their Etsy shop/consultancy/beauty parlour/personal training/etc…I know it IS meant to be inspirational, but all it does is to make me feel a failure for not achieving anything and now being stuck with MS 🙁

  17. Nina Crumpton says:

    I have asked my self that question many times. I don’t know the answer.

    How can MS be taken seriously as a debilitating disease when all I see in the public sphere are people with MS doing hikes and marathons. I consider it a feat getting to the letterbox

  18. Christine Mcneill says:

    I’ve just received a ms newsletter through the post , sure as ever on the front page a man with ms smiling next to a smiling nurse and on the first page it asks if you are ready to embark on a Scottish Canoeing adventure….. How are both these adverts helping ms ?

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