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Showing the mild(er) side of MS

The Today show ran a piece this week for MS Awareness Week to highlight that there are now 12 disease modifying therapies (20 years ago there were 0, nada) and the story of a woman who is not letting MS keep her down. I don’t know about you, but when it comes to MS I think all publicity is GOOD publicity! I was stopped in my tracks when reading the comments under the Facebook posting that the National MS Society promoted of the clip. People were very negative about who they chose, saying that the Today Show needed to show the ‘real’ colors of MS and not someone who is doing well. Hello!!? Isn’t that what we all want? To do well? I, for one, don’t want people to hear that I have MS and automatically think the worst. Anyone with MS realizes that no 2 people experience the disease the same way. The clip on the Today show may have shown this woman on a good morning, with lots of energy, but she may have left the set and had no energy for the rest of the day, dizziness, balance-loss….etc.

Now, don’t get me wrong, I understand the statistics. I know about the ugly side of the disease and have worked with people who no longer have much use of their body while their mind is perfectly intact. I also know that MS tends to fall into 3 categories of disease progression: 1/3 have mild progression, 1/3 have moderate, 1/3 have severe. If my math does not fail me, that means that 2/3 will NOT fall into the severe category. 1/3 becoming severe is still far too many but I want to look at things with a ‘glass if 1/2 full’ mentality. Those who fall into the 1/3 of having mild progression need to have their story shared as much as anyone else. It may just be the hope that someone watching/reading needs to not feel depressed about what the future ‘may’ hold.

Walking out of our home each day has inherent risks. No one is guaranteed their next breath-THAT is a reality everyone must live with. We know that MS is not something that anyone wished upon themselves and that there WILL be hard days but ALL people have hard days. People experience loss of loved ones, have horrific accidents in the blink of an eye, or receive a diagnosis that stops them in their tracks. MS stops us in our tracks at diagnosis and during relapse (more often for some than others). My hope for all, and myself, is that the times when MS is not stopping us in our tracks, we are doing all we can to support one another and bring awareness to the disease so that more can be done to stop IT.

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Comments

  • AJoy
    4 years ago

    I’m sorry, but I have to agree- showing ONLY someone that “looks so good” does little to raise full Awareness of what MS is, how it CAN affect people who have it, and the importance of researching for a cure. While we may not want people to think that the diagnosis is a “death sentence”, NOT showing the negative effects does nothing to raise awareness of our needs.

    By your own statement “Anyone with MS realizes that no 2 people experience the disease the same way. The clip on the Today show may have shown this woman on a good morning, with lots of energy, but she may have left the set and had no energy for the rest of the day, dizziness, balance-loss….etc.”
    “Anyone WITH MS” – Raising Awareness means teaching the people who do NOT have MS exactly what OTHER ways MS is experienced! Showing this woman “on a good morning”, without balancing that by showing her, or another MSer, on one of those “bad days”, does NOT show those people we are trying to make Aware that there IS dizziness, balance-loss, cog-fog, walking difficulties, etc.

    I find seeing this kind of NMSS publicity to be disappointing. I fail to see how showing only that “miler side of MS” helps any of us. All I see it doing is touting the so-called DMDs, and boost the drug companies. Whether 2/3s have the “milder” forms of MS or not, the point is that we are trying to raise awareness, to further the cause of Finding a Cure. Not the cause of selling more drugs. I know that there are many people who have done well on a DMD, but there are just as many who have NOT. Just as there are many who have done well, and seen great improvement with diet changes alone, and many who have not.

    The point of Awareness is to present the Whole picture. By failing to do that, we fail the whole idea of Awareness.

  • Sue
    4 years ago

    When I was diagnosed 25 years ago, all I could think of was those ads calling MS the “crippler of young adults.” In those first few years, every story was saying that relapsing/remitting changed to secondary progressive at some point. I lived in fear every time I had an exacerbation that this was it. Even though I have some permanent damage, I’m working a good job and living a full life, and I wish I hadn’t let those negative stories affect me so much. We need more positive stories about people who happen to have MS thriving.

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