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.
And thank God it’s almost April, because I’m so sick of seeing orange ribbons everywhere and hearing about MS from every news outlet.
And thank God it’s almost April, because I’m so sick of seeing orange ribbons everywhere and hearing about MS from every news outlet.
Oh wait. I mean the opposite of that.
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| Sit down. It’s about to get rant-y in here. |
Unless we’re talking about a package from Hermès, 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. MS 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 disease. There 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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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)
Today I am too tired to comment. hehehehehe…don't see that in the commercials!
You nailed this Ardra! Thanks for saying it so well.
Thank you for reading and for your comments. In many ways PPMS gets bears the worst of this as I'm sure you know.
Haha. I hear you.
Well stated and spot on, my thoughts exactly. The TV commercials are ridiculously misleading!
Keep going however and best you can and keep speaking the honest truth of MS!
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.
"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
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
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.
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.
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.
I have never seen such an insightful understanding of this problem. Even the 4 doctors we’ve seen have no clue. God bless you and all ms warriors.
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
This is sooo good!! I’ve had MS since I was 24 and more recently use mobility aids, so I relate 100% to both sides of this, and I love your point about the idea that people who use aids just didn’t try hard enough. If only it were that easy and controllable!
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.
Had they done follow-up studies following phase 3 trials the drug probably wouldn't have made it to market. Just saying…
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
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.
Oh I could join you. I too am blessed with that wonderful symptom!
That is some real, realness.
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!
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!
Thanks for sharing and for commenting Rychelle. Please feel free to post the Facebook page here if you want to share her story.
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!!
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!!
Thanks for reading. I'm glad you found me!
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.
What a thing to be told. That is stunning.
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 !
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
Big Pharma does not profit from a cure. They also don’t profit by telling the whole story. It’s a sad state of affairs which can easily launch me into a tyrade.
I was diagnosed a year ago and told the same thing…..
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.
In one of my last moments of walking (2 years ago) I face planted in the living room. As I laid there, furious but resigned, a commercial for Tecfedera (sp) aired. Surely you all remember the "sufferer" diving into the pool, happy w/ medical science that rendered her MS simply an annoyance. RIGHT.
Way to go Ardra. We need a lot more awarenes. At least with Cancer, which gets a lot more money and research, there are strategies to fight it and sometimes win. But with MS the future is unknown so we can only fight what is happening today and tomorrow… who knows. It is a brutal way to live and with no cure coming in a lifetime it destroys any ability for future better life. Or for any children that might be diagnosed in the future with no real hope to give them.
Mine was a little different. I lost vision in my left eye to begin. While they tried to diagnose me for a year and I recovered some of my sight, I read everything I could. I had a 3 year old and a husband who had recently been through a bad time with his depression. I was trying to plan my life out and figured if I knew more I could be useful longer. All I got was that I was a lucky one with few symptoms and that I had to find a way to accept a life of uncertainty. I read stories and listened to people who already had it, I investigated possible medications and where they came from. What I struggled with was how so many called it battling with a MonSter. I couldn't reconcile the description, because you can kill a monster or run away, or something. MS can't be killed. You can't run from it. So I think of it as that obnoxious family member you have to be nice to when they come to town. And I don't answer that interview question anymore;where do I see myself in 5yrs? I say, life is uncertain, so I only think ahead 5-8 weeks. You want more planning from me, you'll have to cure MS.
Well, I'm going to dare to suggest another completely different option than what you all are suggesting and open the playing field and what has helped many people with MS including me. I have experienced many of the symptoms you are talking about so I get it. But when the doctors told me that it was incurable, there was only their very invasive and expensive drugs to take to treat it and that I would live with it for the rest of my live I said – NO, NO, and NO and dismissed all the doctors and went it on my own. As a prior professional ballet dancer I "knew" that the body is designed to heal itself of anything. I completely surrendered the MS to God (whatever that is to you) and began listening to what my body was telling me. It is always talking to us.Long story short, I worked very hard for 4 years listening to what my body/being was telling me to heal, loving my body and the MS instead of hating, fearing and fighting the whole thing, (which makes it worse), and it began to heal. I felt better the symptoms reduced to eventually nothing and now I have been symptom free for the past 25 years. After 4 years I was completely healed. I then established the MS Alternative Healing Center and I work with people worldwide helping them to heal themselves. I know of people including me who have completely healed themselves of MS and any illness or injury. The medical system does not have a "cure" but our bodies naturally, innately DO!!
Dare I suggest you were misdiagnosed to begin with? Just thinking….
Great advice, ty for sharing
I really enjoyed your ranting article. Thank you for sharing another perspective 😀
Ugh. I hated that commercial. And what a time to have to see it.
Thanks for commenting Bill. I think what's encouraging about the progress that's been made re: cancer is that we can see how attention/awareness = research funding. We need that to happen more with MS. Look how far HIV/Aids research has come in such a relatively short period of time. So much is possible.
Thanks for reading my rant!
Thanks for reading!
I hear you. I have trouble with this way of thinking too, because the disease is inside me and the idea of fighting myself feels counter-productive. Not to mention the fact that I don't want to think of myself as a loser when I inevitably can't control this thing.
Amen sister!
I have been living with MS for 35 years. I have been living the entire spectrum during these 3 decades. Although I have changed, the DMD’s have changed but the reality hasn’t. You perfectly pointed out how big pharma is getting rich coming up with new ways to modify MS but not cure it or research the cause. That is not in their best interest. Every new miracle drug they come up with has much more intense side effects. The one thing that I am sure of is that movement is the best medicine. Sure I need a wheelie walker or cane when walking outdoors, but I’m still walking! Honestly if I could afford a walker like yours, I wouldn’t feel like a little old lady! ?? anyway keep moving and keep writing your amazing blog which always inspires me! ?
I try not to hate on the ads too much because they’re using actual MS patients for some of them. Those folks don’t deserve my anger, the drug companies and laws that allow drug companies to advertise do.
But yeah, there isn’t a balance in what is shown. The National MS Society (US) barely mentions PPMS or SPMS. It’s all “warrior” bullshit and “overcoming.” The decline in my body is not a personal failure. It’s not because I haven’t tried hard enough or attempted the right magic combo. It’s not from a lack of a positive attitude (which is hard to have when you start peeing yourself). The narrative being pushed by all these organizations is that patients can overcome if they just try hard enough. That just adds to depression and mental health challenges when we do have a decline and see that as a personal failure. It’s a lot of baggage to unlearn and things to tune out.
I think the work that patients are doing on social media is finally starting to have an impact and things are slowly starting to change. I’m hopeful that we’re getting closer to the right path.
I have MS, but MS doesn’t have me. That’s the phrase that I hate being yammered about. It has me, oh, it has me. By the cojones. (If I had those haha)
I was diagnosed 3 years ago and I read nothing for months about MS and when I finally did, I sobbed. The people on the forums made me feel depressed. It’s a lot, MS is a lot. Some days I feel more “normal” than others, but not a day goes by that MS doesn’t have me.
Yes, Ardra, to all of this, especially the part about looking for the root cause/looking for a cure. Truth is that we are all cash cows and nobody really has an incentive to cut off our steady flow$$$ by stopping our illness. They just keep reinventing the same old stupid life force-sucking wheel. Yeah, I’m ranting too. Pisses me off. Thank you for saying what needs to be said.
Thanks for writing my rant!
From my experience there’s quite a lot of ageism going on around MS. Like if you’re over a certain age and you’re progressing, there’s nothing out there for you and you might as well research MAID.
Perfectly said as always. Now I need a nap while I race to the bathroom and trip on nothing and forgot where I was going.
ha. Relatable.
After living with MS for over 35 years I’ve heard, seen, and done it all. From no internet or FDA-approved medications until now.
Yes, we need more awareness, More compassion. More funding. More research. More tolerance. A cure! MS Awareness Month is of course only a month out of a year, but I’ll take any awareness for our community I can get.
And btw, at age 63 I know that ageism is real and intolerable. Who drew the line in the sand that says my demographic is no longer of value? I’ve talked to “higher ups” in MS orgs and also been on pharma panels to discuss the non-use of my generation being portrayed in their tv ads. Crickets. So yeah, we need awareness 365 days of the year.
You nailed it Cathy. Your work is relentless and this community is lucky to have you.
I’m relatively new to this. I got my diagnosis confirmed back in October, after 5 years of uncertainty. My original diagnosis came from a doctor that had a practice in two states. In the other state he lost his practice for falsely diagnosing MS. I got scared but found it odd that on his MRI that was done in house I had 14 white matter lesions on my brain. Plus I did a spinal tap as well. Yet the next 3 neurologists I saw all disagreed about the MS diagnosis. So I move to another state and get in a University Hospital System and sure enough after that it gets confirmed. This article has helped me with acceptance of this new reality and helps me not to feel so overwhelmed and alone. Thank you, for not sugar coating.
Wow, I’m so sorry this happened to you. MS is hard enough. We need health care providers we can trust.
Thank you for reading. There’s a lot of intel on this site, and I hope you will find more of it helpful. You are not alone.
A.
🤎🤎🤎
It might be an old article but it is worth trotting it out once a year as it sure does absolutely nail it about the good, bad and the utterly mediocre about all MS awareness campaigns and the endless dichotomy about which stories about MS should/ shouldn’t be use. Bleah………..
I agree with your perspective Ardra. The reality of MS is that it varies greatly and the hardest and most difficult scenarios are often glossed over and not focused on or talked about as much.
I was diagnosed in 1986 and lived relatively well without taking any DMTs. In 2020 when my MS progressed to SPMS, I wondered if I would’ve given false praise and credit to DMTs had I chosen to take them from the beginning not knowing that the natural course of my disease would have been relatively mild regardless.
I feel we still walk in the dark today as we navigate through our MS diagnoses and as we hit and miss with the available DMTs provided. Still we have to dare to hope that one day a cure will be found.
You had me at the mention of Pierre Herme!
Yes when I first heard about this I just shook my head. Truth is , half the people don’t care and the other half is glad we got it and not them ! It’s Hellish !
That must be why they change the clocks in March just to make things even more miserable ? I’m happy to have found this place so I know I’m not the only crazy one.
“People with more progressive MS are being erased from the conversation. ” Yes! That’s exactly how it feels every time I read one of these articles or comments about how most people won’t wind up in a wheelchair. I have two good friends with MS, one of whom is in a wheelchair and the other of whom is bedridden. I spend most of my days in a wheelchair. I look at “31 days of MS” over at Medical News Today, and it’s a series of chirpy posts from people who were diagnosed two weeks ago and are doing splendidly, gushing about how grateful they are for the disease because it’s making them live fully.
Yeah, right.
I get that many people with invisible MS felt overlooked but from where I live in PPMS land, it feels a lot like the dialogue has been co-opted to say that MS is only about fatigue and invisible symptoms. If that’s true, then why is it that every time I go into my MS Center for a neurologist visit, everyone I see is using a cane, rollator, or wheelchair?
Awesome blog. Thank you for articulating what has been running a loop in my head for years.
Love this article. Agree we need to have more conversations around the cause not just about the treatment for symptoms. I have been doing a lot of research around psychoneuroimmunology, basically how our mind and emotions affect our immune system. The mind body connection is becoming much more talked about in the area of yoga and mindfulness, which is great but its soooooooooooooooooooooo much more then that!