If only the world could see the way we live with multiple sclerosis

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.

13 replies
  1. Stephen Harris
    Stephen Harris says:

    When my daughter was waiting for a heart transplant (obviously a long story!) people asked me how we did it, living each moment knowing it could be her last. My answer was that there was no question, we did it because we had to. Now, nearly 20 years later, I face similar struggles every day with MS, but the answer is the same. I just have to.(My daughter today is a very healthy and robust 28 year old woman, doing her donor family proud.)

  2. DannyJane
    DannyJane says:

    Speaking the truth about a pernicious disease is one of the most difficult tasks imaginable. If it was just MS that had this problem, that would be bad enough. Sadly, there are a host of debilitating, discouraging disorders that suffer this same fate. I think there ought to be a national week dedicated to public education of Multiple Sclerosis, Muscular Dystrophy, Amyotrophic Lateral Sclerosis, and the host of deadly autoimmune diseases who sometimes mimic the symptoms of these and more.

    Such a week would examine what these monsters do to the human body and the human spirit. There should be programs explaining why a seemingly healthy person has no energy, cannot see properly, tires quickly, can’t sleep properly, and requires assistance and understanding. There should be a focus on what we can do to help in the real world. Show the faces of these diseases and teach the public what they are and what those living with them must go through.

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope it is sometimes it almost seems impossible to do what we have to do but we find away to do it or find away to get around it. It is what we have to do like make a cup of coffee, get out of bed, write this blog etc. We make it work even if it takes a day to do. Just give ourselves a chance to do it.

  4. Peggy
    Peggy says:

    Yes thank you for this. I am struggling with billings/ claims..wears me out. In addition to all MS issues. I too often wondered why they didn’t show the ugly struggling MSrs…so wish could use my struggles and appear before Congress. Let them see really see why we need help.

  5. barb kiskiras
    barb kiskiras says:

    I live each day with a hope that those drugs I read so much about will prove to work and a be a reasonable substitution for what I am doing – holding on until the next MRI and praying “we all are cured” and have discovered this has been a bad joke for those of use that are deemed strong enough to take it.

  6. Carla L Broadbent Rogers
    Carla L Broadbent Rogers says:

    This reminds of the song “Day by Day” from the musical Godspell. Check it out. You will be singing for days. Be well. As always, thank you for the screen time and coffee. Be well.

  7. Jan
    Jan says:

    Penelope, You seem to always say the exact right thing to keep me going!! YOU are truly here for all of us going through this awful disease. Many Blessings. Jan

  8. Barbara
    Barbara says:

    Thank you Penelope for expressing these thoughts. I believe this every day and try to stay positive but wow, what a struggle. People have no idea or do not want to see the ugly side of the illness. Yes, thank God there are medications to slow the progress but the illness is still there along with the struggles. Still, we are strong and we will continue to move on every day to the best of our abilities. Thank you for always expressing what I feel every day reminding me that I am not alone. God Bless you!!!

  9. Jennifer Reykjalin
    Jennifer Reykjalin says:

    Yes! Yes! Yes!
    Thank you for this article, it makes me believe I’m not the only one feeling this way!

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