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.

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