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What WE Need to do to Raise MS Awareness

I often hear people (myself included at one point) complain that there is not enough awareness about Multiple Sclerosis. You always see commercials for cancer (for example) and they are not even trying to sell anything! They are just trying to raise awareness and get people up and doing something about it. That is what we need right? So why do we not have it? Some people try to blame organizations like the National MS Society, which maybe they could try to do something but I don’t think one ad would make a difference. So why not? What would?

In my opinion, not enough people actually talk about MS. People are diagnosed and they keep it to themselves like there is something to be ashamed of or embarrassed about. Well if no one talks about it how does the world even know that there is something in need of raising awareness? We as patients need to talk about it more. We have to be open and not just talk about it all in private forums or groups on Facebook. I always encourage blogging but that is not for everyone but pretty much everyone is on some form of social media so don’t be shy!

Don’t try to hide your “MS life” from your friends! Share your experiences! Doing so makes it “real” to people and empathetic people will want to do something to help which raises awareness. You don’t have to do an actual post specifically about it, I am not saying you need to go and announce it to the world, I am just saying don’t be afraid to mention it! When curious people want to know more again, don’t be shy, share with them! Educate the people in your life rather then coming up with excuses for why you can not do something in attempt to hide the real reason; MS. Maybe it’s hard for you because you don’t want sympathy or you don’t want people to treat you differently? Well if that is the case, don’t make a big deal of it! I know I don’t want pity so in my day-to-day life I often will mention it in a conversation very nonchalant; if they catch it and want to know more I will educate them but again, I don’t make it out to be a big deal. I speak of it very casually, just a matter of fact. I even try to throw some humor in there! In doing so I don’t get the pity I hate to get but instead I just get empathy and understanding which of coarse is much different than sympathy.

If you don’t try to shove it in people’s faces they won’t react with pity but it will instead make them think. People tend to talk about things they think about. Maybe next time they are with someone complaining about how hard their life is they will think about you and say “you know, my friend has MS, and…” which is raising awareness because now other people are talking about something they may not have previously known about. The word is spreading.

Yes, there are lots of things we can do to raise awareness but I truly believe that before campaigns, commercials, fundraisers (or anything else you can think of) will actually work the best and most important first step is simply talking about it. Yes, there are lots of people who talk about it online but we need more people talking publicly about it whether it is on Facebook or with a group of friends. There is no one that I wouldn’t tell about my MS, I just don’t understand what the big deal is? Again, I don’t push it or parade it around but if it comes up it comes up because how else will people really learn about it? People need to be able to put a face to it and even though more celebrities are coming out about it and trying to raise awareness (which helps) it would help more (I think) if they personally knew someone with MS and knew how it affects them on a day to day basis. “Wow you have MS? I heard so and so has that but what you’re telling me MS does to you is a bit different than what so and so said. I had no idea how it could affect so many people in so many different ways!”

So again, I can not emphasize this enough; talk about it! Share!

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

  • Constance
    4 years ago

    I agree wholeheartedly with Matt. I was excited when I watched my first-ever seen commercial created by the MS Society during April. Dispelling myths and increasing awareness is very important. I didn’t know much until I was diagnosed.

  • Matt Allen G author
    4 years ago

    And we have MS! For the general public? I mean, I can’t tell you how many times I tell people “I have MS” and they say “what is MS?”

  • BarbieQ
    4 years ago

    I am a professional Opera Singer and I came out of the MS closet in a big way, when the Boston Globe did a large two part article and short documentary film about my struggle with balancing the vagaries of the disease withe vagaries of my business. I have been open and truthful about my struggle on a daily basis. Unfortunately, though I have been met with empathy for soldiering on despite dealing with not only MS but a secondary autoimmune illness as well, I have experienced the cold hard reality of discrimination as well. I have been told by major players in my Art to retire gracefully, that I was now unhireable, no one will risk staking a large amount of cash any longer to mount operas for this leading lady, that I was a fool, stupid, that I should have kept my mouth shut. No matter how I try to dispel common misrepresentations of MS, noatter how I work to continue to educate and share my story with humor and honesty, I continue to endure derision. Even though the chances of me having a flare up that would make it impossible for me to sing is exponentially less likely than a singer will get a cold and cancel because they lost their voice- I am just too risky to hire. Though I probably had juvenile onset MS, and all of my success in the international arena happened before I had a name for the strange symptoms I experienced for many years- I am now persona non grata. I practice every day and no matter what, I hold the joy of music in my heart and I continue to tell my truth. However, it should be known, that no matter your good intentions, people fear what they do not understand, and there can be consequences. Thank you.

  • Chickadee
    4 years ago

    BarbieQ,

    I’m very sorry this has been your experience. When reading Matt’s post, even before I read your response, my first reaction was, ”Whoa! Be careful to whom you share your MS diagnosis with because discrimination is alive and well in all areas of life.” Then I read your response, Barbie, and, while my chosen career of the past 22 years (nanny) has not been nearly as exciting or accomplished as being an opera singer, it has been the major focus of my life besides being a mother. I spent several years having constant relapses and during this time I worked for one family. Never once did my relapsing prior to my diagnosis impact the excellent care I provided for the children. But, within 8 days of my official diagnosis (a couple months ago), I was fired. The family made sure to phrase their ”we’re letting you go” speech very carefully, not referencing anything negative as to my work performance or my diagnosis. Just that ”their needs had changed and they didn’t feel I could accommodate those needs in the future.” Illegal, but still accomplished on their part. So, within 8 days of my diagnosis I’d already experienced discrimination because of it. Ironically, now that I am receiving treatment, I’ll probably be far better off than I was these past 3 years during the time I worked for them. Even more ironically a few days after I was fired, I read a large portion of the National MS Society website which addresses ”to disclose, or not to disclose” specially because of possible discrimination. Wish I’d read that sooner, or had received advice from several other MS patients who advised me very strongly to keep it to myself except for close friends, family who can keep my info private, and think carefully what impact my MS status might have on future employment. So, here I am, a couple months later- no job, struggling to get all kinds of medical appointments and therapies accomplished, adjusting to Copaxone, single mother to a teenage daughter with no family support and very loving but busy friends, and was already living paycheck to paycheck in the first place. Unbelievable, yet, sadly believable now that I’ve had time to process what happened in that situation. Yes, I’d love to be open and share with others about my experiences with MS (that’s who I am- sensitive, talkative, friendly, sharing, love information whether learning or teaching it) but look what’s happened to my daughter’s and my life because I thought I was safe to tell someone the truth. This is not okay. And, frankly, I’m angry. I don’t want to hide or lie but I sure can’t jeopardize anymore of my future than this disease, and others’ perception of it, already has…

  • Lisa
    4 years ago

    I, too think this is important. However, I would also like to comment about some frustration I feel when I get the response I often get of Wow, you sure don’t look like you have MS. Why aren’t you in a wheelchair?” or similar words. I do use that as an opportunity to point out that a lot of the things I deal with daily are invisible and the conversation goes from there. Sometimes I feel like my struggles don’t count. Yes, that’s my issue, I know. I am pretty sure someone (I forget who) wrote about this last month.

  • Kathie
    4 years ago

    I agree with Matt, we should not be afraid to share our MS with anyone! Stand strong and speak your mind. Does the disease suck? Yes it does. There should be an awareness on social media like television about it. To many times we suffer in silence, that has to change now! We blog or talk amongst each other about it, but TV needs to have some sort ad that also talks about it.
    They talk about cancer all the time, my mom died of cancer two years ago! I fell the other day and twisted my shoulder. I furniture walk everyday, I use my walker to get around, this needs to be advertised on TV. So many millions of people are diagnosed everyday and we live with it! It is time that there should be announcements with something big like television to donate to finding a cure like cancer for helping the cause! It may just make a change in what we deal with! Maybe I’m just talking and no one is listening! But I’m tired of hurting all the time!
    Kathie

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