3.24.2016

The Frustrating Truth About MS Awareness Month

March is Multiple Sclerosis Awareness Month and you don't have to tell me twice. Oh, I'm well aware of multiple sclerosis. MS  screams in my face all day long and then wakes me up at night. Thank God it's almost April because I'm so sick of seeing orange ribbons everywhere and of hearing about MS from every news outlet. 

Oh wait. I mean the opposite of that. 

Sit down. It's about to get rant-y in here.

Unless we're talking about a package from Herm├Ęs, my favourite colour is decidedly not orange, but as the official colour of MS Awareness Month it’s lack of visibility is actually a little troubling, because we need considerably more awareness. Multiple Sclerosis is poorly understood, grossly underfunded, and affects a staggering amount of people. 

When we do hear about MS the message is confusing. Even within the MS community we can’t agree on what that message should be. There is significant controversy about how this disease is portrayed in the media, and in drug company ads. The overwhelming majority of what we see are glossy images of young and healthy people doing athletic things, smiling and happy. The kinds of pictures that entice us to try new medications. They’re the pictures of what we all hope to be. They serve to soothe and comfort the public that the number one neurological disease affecting young people worldwide is manageable. They promise good health with a simple pill, maybe a teeny injection. These images are well received by many patients for whom this ideal is even remotely possible, and can be especially comforting to the newly diagnosed who are looking to see what their lives might come to look like.

I totally get this.

When I was diagnosed I read everything I could. It was terrifying. I attended a support group and wanted to throw up the minute I walked in and saw people who looked sick. I never went back. I hated the MS Walk because I couldn't bear to see people in wheelchairs. Instead of compassion, my own fear was reflected back at me. I felt panicked over my future. Seeing the effects of MS was more than I could handle. These were not my people. I was in my early twenties, dating and pursuing a career. I wanted to see the people who looked like me; the people who were doing well, the people who could reassure me my life wasn’t falling apart. I remember someone pointing out a woman in her 40’s who walked with a cane. I was told "She’s had MS forever and she only needs a cane". Only? I swore I would never become that sick. As someone newly diagnosed, I wanted to protect myself from the scariest stories; the more images of people with MS pursuing 'normal' lives, the better.

At the other end of the controversy are those that are angry at the  'normal life' depiction of MS. Who feel outraged that the dancing, rock climbing, happy, ice-cream eaters are not a true representation of what MS actually looks like. After 15 years of MS, I get this too. I know it’s tragically laughable to promise yourself you will never become so disabled as to need assistance walking, and yet I still hear others make this promise to themselves all the time. I also know how hurtful and utterly douchey it is to say this out loud. For clearly the implication is there are those who simply didn’t try hard enough to keep from progressing. I understand why people are pissed to see this Pollyanna presentation of the disease that looks like a lie for so many and that leaves their experience with it completely ignored and invalidated.

The message about MS is murky because the disease itself is murky. It presents dramatically differently from person to person. Even within the same person from year to year. My own disease looks nothing like the disease I had ten years ago. My story is different now and so is the information I need, want and can handle. As patients we can't agree on one simple narrative because there isn't just one. What we all have in common is an uncertain future and a need for more action, for the best minds of medicine and science to attack this head on. Yes, many live a long time without much progression. Tell those stories. 

But tell the other stories too. 

Because as comforting as the best case scenario may seem, there is real danger if we only tell that story. When we sugar-coat the potential of MS we end up in a society under the false impression that MS is under control; that we’ve got it figured out, and shouldn’t we move on to the next thing? We end up in a world where people ask "Why don’t you just take that drug I saw on tv? Doesn’t that fix it?", or "Didn't we cure that with stem cells last week?" 

The truth is MS is most definitely not under control. Even if these drugs benefit some, they are only capable of impacting a fraction of MS cases. We've spent billions developing new therapies to modify disease - why are so few research projects looking at determining the underlying cause? Because the drugs we have are simply not enough. None provide a cure, and none address the underlying cause. They are wildly expensive and have plenty of serious side effects.

Educating is not about spreading negativity. It’s not about fear mongering. It’s certainly not about failing to celebrate all the wonderful things people with MS on any spectrum of the disease can and do accomplish. But let's nor forget, MS is a brutal diseaseThere are no guaranteed outcomes but we must give voice to all possible outcomes. We cannot, and we must not, ignore those who embody our worst fears. People with more progressive MS are being erased from the conversation. When we fail to raise any alarms about MS we fail to mobilize the necessary resources to do the research and the work that so desperately needs to be done. It’s in everyone’s best interest to get this thing cured no matter how well you think you’re doing. 

In the MS narrative the story about how you can live a full life with MS already seems to be getting its fair share of attention and that’s good. There’s an important place for that. But we need to tell the whole story. The number of people living with MS is shocking. In Canada alone rates are as high as 1 in 1000 to 1 in 500 in some places. Orange is indeed the colour of MS Awareness. It’s also the colour of warning. We need to sound the alarm. It’s time to tell the whole story.

End rant. 

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26 comments :

  1. Bravo!!! You nailed it. MS is all of those things mentioned and more.
    One billion dollars was just spent by political parties spewing forth mud and ignorance. Imagine what that money could have done for finding the CAUSE of MS. Cannot compliment you enough for the depth and truth of your rant. Keep it up. (From a Mom whose son was a PPMS victim)

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    1. Thank you for reading and for your comments. In many ways PPMS gets bears the worst of this as I'm sure you know.

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  2. Today I am too tired to comment. hehehehehe...don't see that in the commercials!

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  3. I've been seeing a commercial for an MS drug lately that shows a woman walking through various activities--including swimming. I'm happy for her but the commercial still makes me want to yell at my TV. Until now I just didn't know what to yell.
    Well, now I know: "we must give voice to all possible outcomes".
    Thank you for your voice.

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    1. My experience on that drug was not the carnival pictured in the ad. I spent the better part of a month on the bathroom floor trying not to barf before relapsing about four months later.

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  4. "pour yourselves a cocktail"
    It's funny, when I was first diagnosed 13 years ago, there was no way I was comfortable reading MS blogs or going to MS chatboards. Now, after having this shitty disease that long, and seeing no progress on treatment, I have embraced the "have a drink" and read other peoples story's, and you know what, that doesn't bother me any more. Thanks for your blog, I enjoy it!

    Chris

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    1. Thanks for reading Chris!
      I suspect that's a common reaction for new diagnoses and my heart wants to protect those people while somehow at the same time sounding the alarm to the rest of the world. We desperately need better research.

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  5. Thanks again Tripping! I went through exactly the same responses as you did (I started 22 years ago…) when first diagnosed. I was uncomfortable (panicked / in denial…) with it as well, not to mention confused. MS seems to be an ongoing minefield - not just at the beginning! A plethora of decisions. Glad you decided to write about it - and about us! - Barbara

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    1. Thanks Barbara. Even when I was diagnosed 15 years ago it seemed a teeny bit easier to avoid the scariness of the internet. I think really slow dial up might have helped. But information is power and I am ultimately a better patient for it.

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  6. me again - you're so right. I've gathered a ton of information over the years with the computer
    and am more comfortable with it now for sure. As for the the statistics - they are staggering.
    I brought that info to my chiropractor last week who said that since our genetics can't possibly
    be changing with that rapidity - it must be environmental. I don't know what that means precisely, except that it's outside of us… I too wish they would hurry up and find a cause and a cure!
    Barbara

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  7. I attended a mindfulness meditation class today because I believe that stress exacerbated an underlying predisposition for my immune system to attack my nervous system. Since being diagnosed I have read as much as I can about MS. I understand that it is a difficult disease. But why do the medical establishment accept as gospel truth that there is no cause? MS is the goose that lays golden eggs for pharma companies. They conduct phase 3 trials and as long as they can show that taking their snake oil results in fewer relapses than taking a placebo, the FDA and Health Canada approve the snake oil. And since it's under patent for a considerable period of time, they make lots and lots of money.
    Why have none of them asked the most basic question - why did the snake oil work for some patients and not for others? The pharma companies were in too much of a hurry to commercialise their snake oil, that they rushed to market. Had they done follow-up studies following phase 3 trials, we might be closer to finding out what the cause of MS is.

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    1. Had they done follow-up studies following phase 3 trials the drug probably wouldn't have made it to market. Just saying...

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  8. Thanks, this is so true. I was diagnosed 2 years ago - I got a quick diagnosis & was started on Tysabri the next month. I was very positive as the professional advice I got was that it would probably take me a year to mentally adjust to my new situation but that after that, MS would be very much at the back of my mind. Well, it very much is at the forefront of my mind every single day. My symptoms / disability which was barely noticeable 2 years ago, is now having a severe impact on my work & quality of life. I'm seeing my neurologist next week & I feel like asking for my money back (even though it's the NHS!) as I feel that this isn't what they told me would happen.

    I know there's a balance to be struck between worst & best case scenarios for the newly diagnosed but, as you say, every case/person is different & it's brutal when you've been told to expect a good outcome, but the reality is the exact opposite.

    Great progress has been made with treatments but much, much more is needed to alleviate the daily suffering that so many MSers experience.

    Ps - I love your Instagram posts - particularly the #babeswithmobilityaids Your recent post of over 9k steps has made me seriously think about using something to support my walking. My daily max is 3000k of the most awkward & ungraceful steps you could never hope to witness!

    Ashley

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    1. Thanks Ashley,

      It's not surprising that the media has this narrative but I'm always a bit stunned at the doctors who shill this. I had a neuro tell me a couple of years ago that I wasn't as bad as I think I am when I slinked into his office barely able to hold myself up with just a cane.

      So glad you love #babeswithmobilityaids. It's a work in progress for me. I used to kick my cane out every pic, and now I'm trying to embrace the walker, knowing that every step I can take is a gift.

      Keep moving!

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  9. I’d love to have a commercial about how i start my day by having to clean up from crapping myself bc i have no control of my bowels. i guess my day could only go up from there.

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    1. That is some real, realness.

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    2. Yup. Was told 33 years ago that it was, "A Great Time" to be diagnosed with MS because a cure was.." Just around the corner." Now my idea of a great time is a day when I successfully make it 5 steps to the bathroom.

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    3. What a thing to be told. That is stunning.

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  10. I have been trying to scream this to anyone who will listen...for years!
    My daughter has an aggressive MS. Dx at 22...a nursing home at 27.
    We have her FB page. I used to post daily...the good and the bad.
    The repeated UTI's that went septic. The double ostomy surgery. The newest issue...the recommendations of a feeding tube. In which Heather has refused for now. She is only pureed food and honey thick liquids.
    It is a mother's nightmare.

    PS...will be sharing this!

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    1. Thanks for sharing and for commenting Rychelle. Please feel free to post the Facebook page here if you want to share her story.

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  11. Been MS'r for 28+ years, seen,tried & did all & every treatment I thought save-ish, seen countless drs/specialists ECT... to no true change/slowing down in progression. Started reading about lyme/MS and a complete game changer! You are completely right about Big Pharma! It's time to take our health & money back! MSr's need to question drs motives/kickbacks with pushing potentionaly deadly modifying drugs that may or maynot slow progression. Take our dignity back! MS Strong!!

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  12. Just read this wonderful article. Thanks for putting so precisely what I think. I just got diagnosed with PPMS and feel like no one is really trying to find a cure. Keep on blogging!!

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    1. Thanks for reading. I'm glad you found me!

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  13. Great article BUT I'm surprised nobody has mentioned the "but you look so well" scenario. Except for us MSers, people do not see all the "invisible" symptoms we suffer through and even though we "may look so well" how much this disease steals from our lives and those of our families. Coming up on 39 years with MS and on some days still find myself in denial.I suppose I'm waiting for some insect to bite me and find myself cured !

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    1. I hear you. Before my MS was at visible as it is now, I wrote this about exactly what you're saying: https://www.trippingonair.com/2015/11/but-you-look-so-good.html

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