Buried Beneath MS: I’m Still Me
Last updated: July 2018
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.
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 bodymay 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.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: