Lately I have spent a lot of my time working on social media to help raise awareness of Multiple Sclerosis and while browsing Facebook, Twitter, Pinterest, and Instagram I kept seeing a lot of posts about “what people should know about MS” or “what I wish people understood about MS”. A really good topic if you ask me because, for the most part, the average individual has no idea what MS even is let alone how it can affect people “behind the scenes”. I read so many great posts and so I really tried to look at MS from a third person point of view in order to better understand how the world around me sees the disease that I live with every single day. The point of the majority of the posts that I looked at seemed to be to try to help people understand that there is an objective side to MS that you cannot see. If you recently broke your leg then everyone would be able to tell based on how you look with your cast and crutches (objective) but what they will never be able to see is your chronic pain or fatigue (subjective). Those things are not visible. So while all of this information was very important stuff that I also wish people understood, I felt like something was missing. So I began to think about what I personally wish people understood about my MS.
Translating my experience
So firstly, I have always tried to help people understand this same idea; the idea that there is a whole side to MS that they can’t see. “You cannot see how I cannot see,” I would tell people when describing my vision. But even then, I felt like I was not really translating my experience of what it is actually like to have optic neuritis, oscillopsia, see quick flashes of light while I lie in bed with my eyes shut at night, or even lose a bit of color in one eye. I felt like all I was really communicating was the simple fact that I could not do something that they could because “I have some weird brain disease”. I was telling them what a symptom actually was and how it worked; an objective fact, not a subjective experience.
No outward signs of my visual symptoms
Now, I am just using my vision as an example, obviously there is a huge laundry list of other symptoms that a lot of people with MS (myself included) experience every single day that people cannot see but my visual symptoms have always stood out to me. Through my eyes the world does not look like what it did 5 years ago. I can’t even look at things the same way anymore; trying to shift my eyes from one object to another creates ripples, things are always moving, and they won’t focus as quickly as they should. Yet, despite the fact that I often feel like the world around me is a chaotic and swirling mess of blurry colors, I can look at my eyes closely in the mirror and they look totally “normal”. They look like what anyone else’s eyes would look like which is just crazy to me. How can there be no outward signs of what I am experiencing when it feels so devastating? I can sit at a small coffee table with a friend and have a full out conversation in what (to them) seems like a totally peaceful environment even though to me? I may feel sick to my stomach because everything looks so crazy. I could spend hours trying to describe to them what it’s like, but in the end? They will never know exactly what it is like for me through my eyes because it, like so many other MS symptoms, is a subjective experience that “not being able to read line 3 on an eye chart” does not even begin to explain.
How does the world see me?
So what I am basically saying is the same old thing everyone with MS already knows; just because I look fine does not mean I feel fine. “If I felt half as good as I look then I would be in perfect health”, is what I often tell people. But that is the problem… I have to tell them that. I don’t have the option of telling every single person I walk by in society, a society that typically jumps to conclusions based on what they see. I am 27 years old but I have an aggressive case of a chronic autoimmune disease that’s attacking my central nervous system, a part of me that is hidden from the eyes of the world around me. I have, over time, needed a wheelchair, walker, arm crutches, a cane, and sometimes nothing at all as MS can dramatically change day to day. So with that in mind, if I were just standing in a crowd of people I would blend right in because I look fine but when I am actually walking around the store or an airport I am probably going to be using my cane because between my vision and my balance (two things you can’t actually see like a broken leg) I would not be able to walk without falling on my face if I wasn’t using it. So, though I am not self-conscious, I can’t help but wonder; what do people think when they see a 27-year-old walking past them with a cane? I know how I see the world but how does the world see me? I have grown to hate being told by people, “well, you are looking great”, as if that was at all an indication of how I am actually doing. Now don’t get me wrong, I am not saying that I wish I looked sick so that people would be able to tell that I am sick, I am just saying that sometimes not looking sick can be frustrating because the majority of what I have to battle every waking moment of my life is completely invisible.