Multiple yellow smiley face emojis in rows, but one is on fire and red in the face.

Looks Aren’t Everything…or Are They?

Being diagnosed in my early 20s and now in my early 30s, people are shocked to hear that I have multiple sclerosis. Why? Because I "look so good.” While this is a compliment to me now because I’ve worked REALLY hard to get to where I’m at, it’s not always the best thing to say. (See my other article: MS & Things You Should Not Say).

However, looking perfectly normal it comes with a downfall in a sense at times. People can’t SEE what I’m going through or the pain I’m feeling, so they think maybe I’m overexaggerating, even though we all know that we DO NOT overexaggerate about our symptoms.

Would it be easier if they could SEE my pain?

Especially when it comes to nerve pain. That burning feeling makes you feel like you're burning from the inside out. Or the brain fog type feeling I get at times when I’m overheated or overexerted myself. I feel like sometimes it would be easier for people to understand if they could actually see what we suffer through. I know that’s not possible, but at times, I just get so frustrated and WISH they could see what we struggle with to know that we aren’t making this up. Recently, I got really overheated (I’m in Central Texas), and the whole entire right side of my face was deep red, almost a purple color. People around me were asking if I was okay, and how come I didn’t say anything.

“Does it hurt? Is that normal?”

When I explained to them that I didn’t realize my face had turned a color, that I just thought it was the normal burning feeling I sometimes get, they looked at me funny. The truth is, this is something that I silently just deal with and “usually suffer in silence.

Some people only take notice of what they can see

When you’re questioned over and over again if a pain or other symptom is ‘really that bad,’ you tend to stop speaking up when something is wrong around certain people. But when it was something they could visually see, then they freaked out. Then they looked at me like I’m crazy because I just shrugged it off because it’s my normal, along with many others who live with this illness.

MS has many invisible symptoms

So, case in point, it’s easier for those who don’t have MS to have an understanding of what we’re going through if they can visually see what’s wrong. However, with MS being an ‘invisible illness’ in a sense, that’s not an easy thing to comprehend.

You know that saying, "don't judge a book by its cover"

Here are some examples I have used to try and explain those invisible symptoms in the past. I’ve even had family and friends try these things out physically, so that they could have an understanding.

  • Drop foot: Imagine that you have a weight attached to just one of your legs with a swimming flipper as well. Now try to walk “normally”.
  • Numbness or tingling: When your leg or arm goes to sleep, walk normally. Or, with hands, put on thick gloves and try to complete simple tasks.
  • Nerve pain: Similar to the numbness and tingling, but you know when a body part falls asleep severely to the point that it burns when you try and walk? It can be very similar to that. There is really no one way to describe this. But imagine that your body is on fire, but only on the inside.
  • Spasticity: It’s not just like a Charlie horse, although it can be at times. It feels like someone is gripping my muscles under my skin and tying them into multiple intricate knots over and over again. Then pulling on those knots as hard as they can.
  • Fatigue: Imagine that you stayed awake for 2 days straight, with little to no sleep. Now, try to function normally. Try to think normally, but you can’t because your head is just in a fog. This is something that is a VERY common symptom that most people suffer from, and we deal with it on a daily basis. We could sleep for two days straight, and still wake up with fatigue.
  • Vision issues: This is something that isn’t always an easy fix with glasses, for me at least. My vision has changed A LOT since I was diagnosed, due to the damage on my optic nerve. But imagine that you have normal vision. Then, you put on someone’s glasses who can’t see without them. But wait, also rub Vaseline on the lenses. Try to see and operate normally now.

Understanding the symptoms from which we silently suffer

I could probably go on and on about this, but I wanted to give others a basic understanding of the silent symptoms we suffer through. We need people to understand that not everything is black and white. We all don’t suffer from the same symptoms. We are all affected differently by certain symptoms as well. Just because you can’t see something doesn’t mean that it doesn’t exist. That is the moral of the story.

xoxo

Ashley Ringstaff

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