To See or Not to See
Last night I had a dream and the main details of it I don’t totally remember but I do remember one scene very clearly. A friend in my dream was explaining to another person that I am chronically ill, and that person responded with “Clearly, look at how emaciated she is”.
Now what is interesting about this is that I am not emaciated at all in real life and also that somehow in my brain “emaciated” equaled chronically ill. And this dream got me thinking about what its like to have invisible illnesses vs. visible illnesses. I have MS, and that is for the most part an invisible illness. The hard part about this is that MS doesn’t necessarily show on the outside as many of you know. This is where our favorite phrase comes in, “But you don’t look sick”. To which I’d like to respond with yea, but you haven’t seen my insides. Its difficult to have an invisible illness because its hard for others to take your illness seriously when they can’t see it, or touch it. They have to go based on what you’re telling them, which goes against what they see. Seeing is believing for most of us. This is one of the most common gripes that we all have is that people just don’t understand us, they don’t get what our sickness is like, they think we’re faking, ect. Sometimes don’t you just wish that you could wear your MS in a way that people could see what it feels like to live with it?
Well I also have Ulcerative Colitis and a jpouch (google it). When I was really sick with colitis, you could see it. It looked like high dose steroids, hair loss, perpetual fatigue, and an over all run down appearance. Maybe I didn’t look sick to most people, but I definitely didn’t look like me, and I didn’t look healthy. During this time I would have given anything to have my UC be invisible too. We’re often stuck in this strange place between wanting others to be able to see our illness so they can understand, but being thankful that we can “hide” it and assimilate like everyone else.
Having lived at least a little on both sides of the coin, I truly can’t tell you which side is better. I don’t think one is superior to the other, I think they both have pros and cons. When I was sick with UC, people understood more because they could see it, but they also pitied me more. I was constantly being barraged with looks of sadness and sympathy, which honestly didn’t help much. But then again, when MS acts up, for me, its never been something other people can see. No one can see my optic neuritis and that I only have one eye to see out of. No one can see that I’m numb from the waist down. Sometimes I want so badly just for them to be able to see what it feels like when my legs go crazy from the cold air on my walk to work. But they can’t see it. And on many days, for that, I am grateful.
I suppose the question is, do we really want people to see our illnesses? Are we dying for them to see what its really like to be us, or grateful that we can hide what is going on inside our bodies? For me there is no right or wrong answer to this one, and frankly its ok if it changes on a day to day basis. I will say, honestly, most of the time I am happy that my illness does not show. Sometimes we think how nice it would be for others to see our struggles on the outside, but I have to tell you, when I was sick with UC I didn’t appreciate any of the pity looks that I got. Though they all came from a place of concern and caring, it didn’t make me feel any better that people knew that I was sick because they could see it. In fact it made it worse. The “How are you feeling” questions with that tone. Oh that tone. That tone that just says, “I am so sorry for you, you look awful, I wish i could help, you poor thing, I feel so bad for you”.
Perhaps its just me but I don’t want the pity because the more pity I get from the outside the easier it is for my to pity myself. And I can’t afford to do that. There are enough things in our lives that could bring us down physically, that we all have to stay strong mentally.
So I pose you the question, would you prefer it if people could actually see the symptoms of your MS?