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Being Unique with MS

I’ve heard a lot of things since I’ve been diagnosed with MS. Some of them are like, “Why don’t we have a ‘famous’ spokesperson for MS to represent the MS community?”

Well – it’s really hard to choose ONE person to define MS for ALL of us! Just because we are all diagnosed with MS doesn’t mean that we all experience the same thing living with it. Some of us have more flare-ups then others and some of us deal with symptoms that a lot of other patients never experience.

I’ve had people tell me, “OH! You have MS… but you look so good!” And I’m thinking to myself, “Well what am I supposed to look like?!”

Just because I’m walking around right now, and you can’t “see” anything wrong with me, doesn’t mean that’s how it’s always been. Or how it’s going to be in the future.

MS is known as a debilitating illness, so should we have a disabled person (someone in a wheelchair/someone who shows physical signs of being disabled) as our “Spokesperson”? Personally, I don’t think that’s such a good idea.

When I talk to people who have just been diagnosed and are around my age (I’m 25, by the way). I’m always asked, “Am I going to end up in a wheelchair?” The truth is, there is no correct answer to that, because no one can predict the future.

I can say that, yes, I’ve been in a wheelchair… I also have a Walker and Cane. Do I use them right now on a daily basis? No. I was in a wheelchair during a VERY bad flare, but that was right after I was diagnosed, so it was a lot to take in.

What I’m trying to say is, we’re all different, even though we are all living with the SAME illness. MS Patients are kind of like snowflakes – no snowflake is the EXACT same.

So just because someone is talking to you about someone else they know that has MS who isn’t doing well (or are completely disabled) that doesn’t mean that you are going to end up the same way.

Is MS scary with how unpredictable it is? I would be lying if I said no.

I’m not saying that you don’t have anything in common (as far as symptoms go) with others living with MS, but you’re not going to be “living MS” the same way as another person.

I know a lot of people who suffer from spasticity… some take an oral medication to help with their muscle spasms while others have had to get a Baclofen Pump or have Botox injected to control their Spasticity. So even if you are dealing with the same symptom as another patient, it’s still going to be different.

A good example-I have a cousin on my dad’s side who has MS. She was diagnosed a few years before I was. She has only been on one therapy with 2 or 3 lesions shown on an MRI and the only symptom she has had is Vertigo. Well… my MRI reports stated that they stopped counting lesions in my brain at 20… and I suffer from fatigue, spasticity, optic neuritis, cognitive function, pain, nerve pain, etc. That just shows you that even ‘family’ aren’t the same with this illness!

The bottom line is – Yes, we’re all living with Multiple Sclerosis. Some of us are worse off than others, but we still connect because we’re all still living with the unknown of MS.

We just all need to be here to support one another… and understand and listen to each other with out passing judgement.

Embrace being unique – in more ways than just your MS!

xoxo

Ashley Ringstaff

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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

  • KatrinaS
    6 years ago

    You’ve said it well.
    I had a sister die 14 years ago from MS at age 33 after being diagnosed at age 19. I’m 44 and was just diagnosed a year ago and our two stories doesn’t even compare. She tried and tried and tried and was dealt quite the blow with this thing. I plan to do the same no matter how wibbley wobbley I get. 😉

  • DianeD
    6 years ago

    I liked your article and agree with you with the exception of the celebrity spokesperson. To date the celebrities who have come out about MS are too fixated on ‘I’ve got MS, but look how great I’m doing). They kind of disappear when they worsen.

    We need a spokesperson who tells it like it is. We need someone who says ‘yes’ some folks function well, but some don’t. MS is complex, almost unexplainable. Some people cannot put on the sunny face people want to see.

    When people ask me about my MS, I would like to say ‘I’m lousy, itchy, weak, dizzy, wobbley, etc. I want to tell It like it is. Then I say, I’m pretty good, doing the best I can.

    I’m more than 40 yrs older than you Ashley and with time there are other diseases that rear their ugly heads. That really mixes things up, believe me.

    I’m not looking to be a crybaby, but I would like people to know that I’m not a whiner; that MS is a struggle and VERY complex!

  • Curious1
    6 years ago

    I once was told “the only predictable thing about MS is its unpredictability”. How true this statement is!

  • Wendy
    6 years ago

    I’m enjoying this site! I do wish MS could have a spokesperson, but am in agreement that because MS affects everyone differently, no one individual could really “speak” for all people with MS. Even when the public sees people like Ms. Romney or Mr. Osbourne, it conveys a “false” impression of what the disease is like for many of us. I do think the more the public learns by exposure to various people with MS, the better.

    I remember when I went to my first MS support group and talked with a few people who mentioned they owned a cane, walker, and a wheelchair/mobility cart, I was confused, as they were currently not using any of those aids. It was hard to grasp that one might need those during a major exacerbation but improve with time. Now I comprehend that concept, but it’s hard for someone with no knowledge about MS to understand that. Jaybo’s description of MS as “mysterious and fickle” is sure spot on!

  • Casa4
    6 years ago

    You did an amazing job in explaining how MS is different for everyone. On several occasions I’ve found myself in conversations where people tell me “just do this” or “just do that”. Or you need to be a stronger advocate for your health – that’s a recent comment from my boss. I’m having problems with a couple medications and after being on them for 2 years I’m suddenly allergic to them. My point in sharing my story is that having MS is not like having a broken leg. You don’t follow procedure a, b, and c then you are cured. I’ve also been asked why don’t you go back to the original medications you were on. That was working for you. My response is always ” I wish I could but MS is an ever changing disease, full of surprises. The medications I’m having problems with were part of my original treatment plan. Therefore we have no choice but to address the issues at hand and move forward with new medications that will effectively control my symptoms.
    I try to be kind and patient when explaining my disease because its hard to wrap your arms around. Your blog is fantastic and I’m going to send it along to friends and family. This will help me to better explain, what I refer to as the “invisible disease”. If you can’t see it people think its not be there.

  • Wendy
    6 years ago

    Well said!

  • Joybo
    6 years ago

    Nice piece, Ashley. I am fortunate to have mostly invisible (though painful, inconvenient, exhausting and sickening) symptoms, so people think I look so great! God love ’em.
    You stressed well how different MS affects different people. When the opportunity presents itself I try very hard to educate “the public,” usually new friends or acquaintences, about this mysterious and fickle disease. I’m sharing your post and enjoy the website. Keep on Keeping on and sharing.

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