It is simultaneously wonderful and frustrating to have a disease that can be invisible to others. I suppose if you're going to get a disease, having one that lets you blend in with a crowd the majority of the time is a pretty great thing. While I'm sure none of us would trade our disease in for one that was blatantly out there for the world to see at all times, the invisibility of this disease can not only be a source of personal frustrations, but also serious misconception.
So what are some of the wonderful aspects of the invisibility of my MS symptoms? If I go out and look for a new job, I don't have to tell my potential employer that I have MS. When I am out and about doing daily shit, I don't have a stamp on my forehead that reads "I have lesions on my brain". I physically appear no different than I did one year ago when MS wasn't even a part of my vocabulary. My body however is telling me otherwise, and at times I find myself uber frustrated with the fact that I feel like crap but "look so great".
In the last four months, I feel like I have morphed into some sort of electronic gadget that's constantly plugged in. When I get off the treadmill, my legs feel like a crappy laptop trying to power on. When I'm walking my dog and decide to do a little sprint (meaning the dog is most likely chasing a cat) the legs go haywire. When I'm at work and find myself overheated, I start to lose my balance. When I get out of the shower each day, the base of my spine and the bottoms of my feet tingle for a good half an hour. These are all totally manageable symptoms in my book, because it means that I'm walking, I can see, and I can swallow my own flipping food for that matter. Manageable or not however, there are times where I just feel like complete crap, and I hit my wall. As a 27 year old who by most standards would appear as the picture of health, it can be hard to try and explain this stuff to other people.
While I don't exactly worry about trying to relay the way I feel to joe blow down the street, when it comes to my friends and family, I do want them to sort of understand where I'm coming from. I am learning however, that this is something that isn't going to happen overnight. I don't believe though that it isn't for lack of trying on most peoples part. It's just hard to understand something you don't experience firsthand. I would probably think someone was full of shit too if they told me they felt like their brain was "buzzing". Brains aren't suppose to buzz!
Aside from feeling personally misunderstood, invisibility also plays into the whole disease being misunderstood in general. Although a lot of us share the same types of symptoms, none of us experience the disease the exact same way. Symptoms and severity range from those living with MS which is benign, to a more progressive form that can be totally disabling. There is large gaping hole between being symptom free and being in a wheelchair, which I think many of us fall into. Images of this disease in major media seem to play up the more severe and disabling aspects, which isn't exactly telling of what MS always is. People are being shown an MS they can see, and the fact is, you can't always "see" it. Although MS isn't the only disease on the block which is sorely misunderstood, I think it is important that we work to at least make sure those closest to us have a decent idea of what MS is and what it is not. We don't have to tirelessly complain, and I know it's a given that most people are probably not going to "get" how it feels to be us. I don't know how it feels to be a tomato, but I certainly know what it is. We don't have to educate the world, but I guess educating those around us might help the cause just a bit.
