Buried Beneath MS: I’m Still Me

Buried Beneath MS: I’m Still Me

Multiple Sclerosis (MS) most often affects people in ways that are not easily visible to others. You can’t see our fatigue, you can’t see our poor vision, and you can’t see our pain (to name just a few examples).

The more visible MS symptoms

Sometimes, however, MS will manifest in ways that are visually obvious to those around us. Most commonly, the first symptoms of MS that are visually apparent to the untrained eye, have to do with things like poor balance and spasticity in the legs because those kinds of symptoms greatly affect how we walk and usually contribute to the need for a cane, walker, or arm crutches.

Visible mobility aids

Because of symptoms like these as well as weakness/paralysis (again, just naming a few) people with MS may also eventually end up using a wheelchair. Unfortunately, in today’s society, the average individual who sees someone using one of these mobility devices will probably think (maybe even subconsciously) that “something is wrong” with that person. At least that is what I personally think. “Wrong”, I hate that word, just the same as I hate the word “normal”, but that is a whole other thing. So far, we have touched on people who have MS but no obvious signs of physical disability and people who have MS but do have visible signs of physical disability.

Cognitive disability

But what about cognitive disability? You can’t see it from a distance or take a picture of it but you can often just tell that someone has it (“it” being some sort of cognitive disability/impairment). So I am not sure whether to consider this an invisible symptom or a visible symptom because it’s kind of a bit of both.

It’s invisible until you address it

I have said this many times before, but if I were sitting down in a coffee shop you would never know that I had MS because I would just look like any other guy unless I was using my cane to get around that day. Just the same, you would have no way of knowing that I had some sort of cognitive impairment until you sat down with me and actually tried to start a conversation. Even still, unless you were looking for it you might not even see it.

When my brain is struggling

When my brain is struggling to find the right words and put them together in a way that makes sense, my skin does not start glowing blue. The only indication that is objectively apparent is the quality of my speech (sentences become really broken up as I continuously pause to try to find the right word and catch my breath) and maybe visual cues such as how my mannerisms change to reflect the internal struggle and frustration of my brain. Depending on how tired/fatigued I am you will probably also notice my speech start to slur as if I were drunk but I’m not… it’s just the muscles of my cheeks and tongue failing to work the way they are supposed to… dysarthria I think it’s called.

A constant battle

This has become a constant battle for me; not being able to find the right words and properly put them together so that I can get my thoughts out of my head in a way that makes sense to the people around me. In fact, there are many times that I will say something and literally pause to mentally digest what I just said out loud and think to myself, “wait, what? That made less than no sense,”. It took me a while but eventually I became comfortable enough with my physical limitations that going out with a cane did not make me self-conscious. I am 28 years old and I totally rock that cane, but I can’t ever imagine feeling that comfortable with my speech.

How I’ve changed

Growing up I was always very articulate, being sure to do my best to pronounce words as they were meant to be pronounced and highlight each syllable with an emphasis that showed people that I knew exactly how that word was broken down and spelled. But that’s not what has me all self-conscious about it, you see, remember how earlier I said that the average individual in this world who sees someone with a physical disability will probably think that something is “wrong” with that person?

I’m still me

Well, I would assume that those same people would hear someone like me struggling to speak and see it as confirmation that something is in fact “wrong” with them. But I have never really cared what people thought of me, not strangers I mean. So why does this bother me so much? I spent a lot of time thinking about this, and I came to a two-part conclusion. First, I don’t care what someone I have never met thinks of me, but I do care what people that I know think. But they know I have MS, they know what it has done to me, and they don’t care, so why do I? Well, that leads me to part two; most of these people I knew long before MS did the damage that it did to me so they know who I used to be and I know that I’m not that way anymore, not on the outside. But on the inside? I’m still me!

Feeling stuck and unheard

I’m just buried so deep beneath all this MS crap that I feel like I can never get out long enough to make people aware that I am still there… every symptom that I deal with (be it physical, cognitive, mental, or emotional) is painfully obvious to me from the moment I wake up until the moment I go to sleep. I feel like this is all happening to my body, the body that serves as a vessel to… well… me. My body may appear to be broken down to everyone around me, but deep down on the inside, like someone trapped in a room made of foggy sound-proof glass walls, I feel like I am stuck and my attempts to communicate with people on the outside are sometimes unheard. That is what makes me feel self-conscious: is my speech and cognitive function making people think that I’m not all there anymore? I mean, there may be times where I look and sound like I’m not (hell, there are times where I feel like I’m not) but the fact of the matter is, I am. I’m still in here.

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

View Comments (20)
  • Spiritdancers
    6 months ago

    I frequently exclaim,
    “I miss me!”

    Thank you everyone. The article and the posts are very reassuring.

  • Foxyejo
    6 months ago

    What i find most difficult is how long it takes to get the words out and how the people who used to know me before MS dont give me the time to get it all out and assume they know what i was trying to say. And i just cant argue that i know what i said anymore because im not so sure. I now say i have STCRS Short Term Cant Remember SH**. So thanks for the story and that i know for sure im not the only one. Hang in there and Have a Ducky Day!

  • Matt Allen G author
    5 months ago

    LOL! STCRS, love it! But yeah, people I have known since before I was diagnosed sometimes do the same thing with me (but not often) and it’s frustrating but then when I meet someone new I hear how they talk to me and sometimes (again, not always) it sounds like they are treating me just a little different, like they are trying to be “more gentle” and THAT really bugs me.

  • Yoshitail9
    6 months ago

    Your MS has surely not caught up with your ability to write. Great article; great style !..MSer since 1979…now 71 yrs old. Using a cane and losing my words and thoughts at times. Toss up between MS and age ???…who sang that song “I gotta be me” ..hang in there.

  • Matt Allen G author
    5 months ago

    Thank you, I love that writing allows me to pause and choose my words very carefully at my own pace which you can’t do in an actual conversation because sometimes I will spend hours waiting for the right way to say something to come to me. And yeah, I am only 28 but I have heard from doctors on more than one occasion “that’s just aging” and all I can think is “how old do you think I am? Age shouldn’t be a factor just yet…”

  • ARTISMAE129
    6 months ago

    Matt, I read this article and thought, ” this IS me!”. I struggle daily with the congnitive symptoms & I hate it. My fatigue is terrible most days, but when I do have energy, I over do it. Thanks for writing this for I’m sharing it with my husband to read.

  • Matt Allen G author
    6 months ago

    THAT is the worst, when you finally DO have energy but end up overdoing it because “you want to get as much done as you can WHILE you can” and then, because you overdid it, you pay for it for the next few days/weeks.

  • Tess
    6 months ago

    Could not have said any of this better. Thank you.

  • Matt Allen G author
    6 months ago

    Sorry you can relate but glad you enjoyed the read,

  • Azjackie
    6 months ago

    How ironic. I don’t know if it’s my age or life experiences. I’ve always had something “wrong”. Born with psoriasis, embarrassed in junior high P.E. with scoliosis, and dermatologist with the terms acne vulgarus. My family always treating me like an injured wildabeast. Leave her behind and get away from her. Luckily? Never heard a disparaging word from friends or employers. Very involved and active with both. Now add MS and significant mobility issues. I literally thought I was going to drop dead when my boyfriend said I was beautiful.

    To me I don’t care what people say or think. It’s actions that matter. My boyfriend helping me get around, my friend coming over to talk to me, heck the dental hygienist today helping me to the room from the lobby. That makes me feel they know it’s still me. And everyone who sees something “wrong” if not now they’ll have something “wrong” with them too.

  • Matt Allen G author
    6 months ago

    You are so right but it’s so hard for me to REALLY feel that way instead of feeling embarrassed and frustrated and everything I talked about… but you ARE right, 100%

  • meganjsalcido
    6 months ago

    I feel this so much! It sometimes seems impossible to explain the fatigue and strange sensations and pains. I’ve found it challenging to explain to friends (and especially acquaintances) why I can’t make it out this weekend or how I just don’t feel right. At times I feel like I’m missing out on my twenties. Some will say, “you look great!” but have no idea that I can barely keep my eyes open when a wave of fatigue hits, or how nervous I get that I’ll trip over my own feet when my toes go numb out of nowhere. The more you talk about it and the more it’s out there, the more aware and understanding people will be. Even if your body isn’t cooperating, you are still in there!

  • Matt Allen G author
    6 months ago

    Ha… I am 28 and I feel like I didn’t get to enjoy my 20’s like most people do. I am mostly hoping that I can get things under control enough to really enjoy my 30s. I feel like no matter how many times I try to explain why I can’t always make it places (or have to cancel at the last minute) people still look all disappointed but not because of my MS, it feels like they are disappointed in ME. I am certain they are not but man, that’s how it feels.

  • Julie
    6 months ago

    I was married when I was diagnosed with MS. 30 years of marriage and he left. Just like that. Anyway, before he left he did try to get me to use assisted devices. I really did need a cane, my balance and gait were as if I was drunk. I didn’t want to walk with a cane. People would stare if I walked with a cane. I finally discovered that people also stare if I landed on my backside in the middle of a store or a sidewalk, etc.

    So one day my ex came home with a cane that had a beautiful elephant that was the handle. He knew I was a sucker for an elephant. I have around 200 of them around the house.

    So I started walking with a cane. The first thing I noticed was I was walking without fear of landing on my butt (for the most part). And then people were noticing my elephant. It really was an eye-catcher.

    So he goes with me everywhere now. I have one for around the house and one I keep in my car for when I’m out and about. It’s been 18 years now and I don’t mind too much anymore. Maybe it’s because I’m 18 years older and just don’t care what others think.

    It’s not been easy but I’ve gotten comfortable with my drunken walking. The talking is embarrassing for sure. I don’t know what to do about that. It’s not something we ever get used to I suppose. But it’s just a part of living with this monster. Good health to all, Julie

  • Matt Allen G author
    6 months ago

    I felt the same way about using a cane. I was 23 when I started using one and was certain people would stare but for me, it was better than using a wheelchair or a walker as well as falling on my face. I bought a nice wooden cane because that made me feel better than if I were using an aluminum cane from the hospital. Not that there is ANYTHING wrong with that, I just wanted a little more style haha

  • 14l9t4t
    6 months ago

    Thank you for sharing your story . Its been helpful to me in explaining to others how it feels on the inside. Even though I look the same old me on the outside. I find people forget I am sick . Some even go as far, as you don’t look sick. I wish you the very best in the future. Don’t lose hope your very young and who knows there may even be a cure coming down the line.

  • Matt Allen G author
    6 months ago

    “If I felt as great as I looked I would feel utterly amazing” – that’s what I tell people haha

  • LuvMyDog
    6 months ago

    Speech difficulty is terrible, it’s embarrassing, people who are not aware of you having MS and all that goes with it, think you’re stupid to say the least. Being someone who has always been an excellent conversationalist, it’s maddening to me, makes me not want to talk to anyone. I have to plan, rehearse, the simplest questions or short dialog. Phone conversations with customer service rep’s at a bank or store are becoming nightmarish. Yes…I AM still here, buried under this ugly disease that makes me feel exhausted from the time I get up in the morning until I drop off to sleep at night and when I struggle to be me, a person who had a very high IQ from the time I was a kid and spoke to many people every single day in my job and now struggles silently to hold a short conversation or find the simplest word or remember what that thing is on my kitchen counter that I make smoothies with. Oh yeh, it’s a blender!! Took me about 15 minutes this morning to get that out of my mouth. If someone had offered me a million dollars to come up with the name of the thing quickly….I sure would have remained poor.

  • Airtripper.NZ
    6 months ago

    I am at the point now where I no longer want to interact with anyone other than close family members because of this.
    I too am a well educated, previously well spoken, intelligent individual, who was very social and adored having discussions, debates, ‘catch up’s’ and communication was one of my strengths.
    It breaks my heart when I am unable to answer basic questions, remember words, and stumble over my sentences. Or those times the word that comes out of my mouth is not the one that’s in my head.
    I’m embarrassed of myself.
    I rarely talk on the phone anymore. Thank goodness for messaging and email.
    I know it shouldn’t matter what somebody else thinks of me, but it does. I sound stupid, uneducated, with nothing valid to say 🙁

  • Matt Allen G author
    6 months ago

    Wow, it’s like *I* wrote this reply because I agree 100%, it’s very embarrassing and maddens be (to say the least) as I always spoke really well growing up and now… Things sound right in my head but once they spill out of my mouth it’s something completely different!

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