In honor of MS Awareness Month, I wanted to share some of my own thoughts on what it is like living with MS. Multiple Sclerosis is such a hidden disease. Most of us that live with MS suffer in silence because unless we are in the hospital, having to use an assistive device, or slurring our words, people have no idea the daily battles we face. I want to start by saying that I don't believe in comparative suffering, because everyone has their own personal struggles they live with. This post is strictly from the point of view of someone who lives with Multiple Sclerosis. Have you ever wondered what is behind the smile of someone who is living with MS? To be honest, every day is like putting on another episode of the same show. Have you ever been around someone with MS who is giving you an hourly update on how they are actually feeling? My guess would be no. I mean, who wants to hear a play by play of what we feel all day? It makes me think of the Jim Carrey movie, Liar Liar. In general, it would be difficult for anyone, no matter your situation, to have no choice but to verbalize you true thoughts all day. For someone living with MS, it would sound like a Morse Code of pain, tingling, burning, numbness, weakness, muscle spasms, fatigue, etc. Who wants to listen to that all day? I can promise you that we don't enjoy living it so that last thing we want to do is verbalize every uncomfortable moment. Because of this, we tend to put on the same act every day. It is common for people to ask, "How are you feeling today?" and most of the time the response is "fine." Let's be honest, we all know the true answer isn't really "fine." That's like asking someone who is grieving the loss of a loved one how they are doing... they are going to respond "fine" when you both know they are anything but fine. Like I said earlier, every day we script our lines and prepare for the next episode of the daily show that is our life. There are so many wonderful, supportive people that are there for the good and the bad times. Unfortunately, there are also people who tend to forget that you don't suffer from MS only during a hospital stay or a fundraising event. Honestly, I don't believe their intention is bad...they are dealing with their own personal struggles. We have all heard the phrase, "out of sight, out of mind." This phrase seems to pinpoint what it is like for a lot of people who do not live with a debilitating disease. While on one hand it is a blessing that you can't always just look at us and tell that we are sick, on the other hand it's frustrating because people forget that we are still fighting the same battle whether you can see it or not. We have also all heard the phrase, "you never know what someone is dealing with." Again, this could not be more perfect for people living with MS. It is hard to listen to someone complain about something that seems so trivial, yet they are healthy and their world does not revolve around a disease that can surprise you at any moment. When I wake up in the morning, I never know whether my body is going to be kind to me that day or if I will not be able to walk before lunch time. It is definitely a twisted way to learn a real life lesson. You really DON'T know what someone might be going through. It happens often that someone complains about something so surface level in front of me while internally I am thinking, "Are you kidding me? If that was my main concern, life would be great." Is that really fair of me think? Isn't that making assumptions of what I am seeing on the outside? This is the same thing I accused people of doing to me. I have to remind myself that while that may be what they are complaining on the outside, they still may be dealing with some trauma behind closed doors. It is all about perspective. Bringing it back to the point of this post, the perspective of people living with MS is that they are doing fine most of the time when in reality most of us are probably in some form of pain or discomfort when you see us smiling and acting our way through the day. In honor of MS Awareness Month, try to take a moment to acknowledge the struggles that people surviving MS are dealing with. Try to appreciate the smiles that they are giving you, knowing that their smile could very well be covering up a lot of pain. Again, every day is another episode of the same show... living with Multiple Sclerosis.
- Christina Carville