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Sensational Headlines and False Hope

I think of myself as an optimistic-realist. I know that there is no cure for my MS, but I am certain that there will be one someday. I am confident that we will soon be able to treat all types of MS more effectively, and to even repair some of the damage that has been done. I am optimistic that, within my lifetime, we will learn why and how this disease has latched on to so many of us, and finally be able to protect future generations from it.

Coming up short

A cure, or even just an effective treatment, would mean the world to me. I obviously want to beat my MS once and for all, but above all I want to be able to offer that option to my patients. As a clinician nothing makes me feel more helpless than watching someone I’m treating or a friend with MS deteriorate. I can help them adapt, encourage them, and treat their symptoms with a variety of therapies, but there are times when I pull out every tool in my arsenal and still come up short. Practicing medicine has made me feel like a hero and a complete failure, often all in the same day.

The frustration of being on the outside

The way I feel about the people with MS that I treat has given me a small glimpse into what it must be like for our friends and family. In the beginning they look on as MS steals some of the “small” things from us- like our ability to stay up late on weekday and still function the next day, or to lay out on the beach on a hot day. Then over the years they have to watch MS take bigger and bigger chunks of our lives like our ability to walk smoothly, hold a job, or get through a day without being in pain. I get how frustrating it is to be on the outside looking in, and how helpless the people around us can feel at times. Unfortunately, when you couple desperation with a catchy headline like “Surprisingly Simple Cure for Multiple Sclerosis Discovered”, “Cure Multiple Sclerosis with the Paleo Diet”, or “Vitamin D Proven to Cure MS”, things can get a bit sticky.

The extra burden of irresponsible journalism

I know many of us get annoyed with people constantly telling them how to cure their MS with some diet, supplement, or exercise they heard about. Personally I don’t get frustrated when people reach out, because I understand where they are coming from. It usually comes from a place of compassion and concern, which I am always grateful for. To me it is encouraging that I have so many people in my life who are kind enough to keep an ear out for something that could potentially help me. Getting angry at them would be misguided, but I do get angry at the people writing those sensational headlines. I’m furious at them for making me break the bad news that MS is still incurable over and over. It angers me that they get the hopes of my friends and family up, only to deflate them. How do they continue to get away with dashing the dreams of the millions of people living with MS, just to get more page clicks? Maybe I’m being overprotective, but in my opinion MS is more than enough to deal with on its own, and we definitely don’t need the extra burden of irresponsible journalism.

Holding on to hope

Hope is what keeps us moving forward, but false hope can be as crushing to the spirit as MS can be to the body. When (not if) we do finally find the cure to this disease I will be shouting it from the rooftops. Until then lets keep the journalism honest and responsible, and focus our efforts on coming together to end MS forever. I look forward to celebrating our victory with the entire MS community.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie
    2 years ago

    My mom, bless her heart is always emailing me stories she has run across. She wants so bad for me to try this and that. I understand. If my daughter were ill I would probably look to the end of the earth for answers. I just gently tell her that she will be the first to know when any answers are forthcoming.

    I imagine that people not involved with the MS world have a difficult time understanding that there is no cure yet. There are so many stories out there it has to be confusing. I get it. But the next person that sends me a notice to stop drinking Diet Coke is going to feel my wrath! LOL not really but that’s one that irritates me. I don’t know how that will cure me when I have drunk soft drinks in probably 20 years. Anyway, that’s just my 2 cents.

  • Julie
    2 years ago

    *haven’t drunk soft drinks.

  • Monk
    3 years ago

    Hi Stephanie,

    I want to thank you so much for your post. Your the first person that I’ve come across that has called out irresponsible journalism. I’m not sure what can be done, but you may have some ideas.

    I also question some of these studies such as ones that claim a high sodium diet or a high fat diet or drinking alcohol can cause MS. As someone who has adhered to a healthy diet and doesn’t drink, it leaves me scratching my head. It seems that these studies are simplistic and trendy. Are these scientist just trying to make a name for themselves? Or do they honestly feel they are helping? These studies have an underlining notion that we are responsible for getting this disease.

    I appreciate your understanding of well meaning people who mention that they’ve heard about some cure for MS. As you said they are honestly wanting to be helpful.

    So grateful I found you and your blog.

    (Please disregard the comment below. I accidentally hit the wrong button!)

  • Monk
    3 years ago

    Hi Stephanie,
    I want to thank you so much for your post.Your the first person that I’ve come across that has called out irresponsible journalism. I’m not sure what can be done, but you may have some ideas.
    I also question some of these studies such as ones that claim a high sodium diet or a high fat diet or dri

  • Azjackie
    3 years ago

    I 150% agree. I have fell victim to the “snake oil salesmen” following vitamins and special diets…Good thing I’m broke unable to continue them.

    I have come to the realization, after 8 years of MS, there are approximately 100 billion axons and oligodendrocytes in the brain alone. Myelin is affected anywhere along them in any combination. This is why we are each different and why this disease has not been cured yet.

    I feel one day there will be a cure. Somebody will figure it out. It is difficult to imagine especially when we don’t feel good but we must think about the cure.

  • Gordy
    3 years ago

    Many thanks for this piece. I’m glad I’m not alone in my despair at the seemingly never ending miracle cures for MS. I’ve become quite immune to the empty rhetoric, but it’s still sad to think that so many are duped by these clickbait headlines. There is a huge market for self help, and I think much of it is aimed there, but even so, it’s difficult especially when coming from well meaning relatives.I think a big problem is simply that most people don’t differentiate. They just don’t realise that there are four different types of MS, and each has its own ‘sliding scale’ of symptoms and degrees of pain. MS is not ‘one size fits all’ . Given the lack of known cause or cure, many with MS are desperate for answers – and where people are desperate,Snake – oil doctors abound.It’s a sad reality. I agree with you, that false hopes are not just unfortunate – they are literally damaging.

  • Sue
    3 years ago

    Both of you are spot on. It’s hard for everyone to understand that not only do each of us have m s in a different way, but we have different “weaknesses” on different days and at different times of the day. I have the most strength in the morning”. By the afternoon, I may not be able to stand or keep my eyes open. After a nap, I do better until the evening. This is true unless it’s hot or humid, or I didn’t sleep at night or if I went swimming, physical therapy, a play, a doctor’s visit, out to lunch or there is the letter “d” in the day of the week. Anecdotally, everything we do, eat, experience has a great effect on us.
    The unaffected population will say that we’re no different than they are. The difference is when we say we can’t move, we can’t. It’s not that we ate gluten or potato chips or are not trying.
    So many people care and are thoughtful . There are also many who believe that there is a magic diet, doctor or treatment . I look for it everyday. Luckily, my neurologist keeps me real and my husband keeps me going as we wait…. for an answer, a treatment and a cure.

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