The Mask

Lately, I haven’t felt the greatest. My fatigue is more prominent, I’m having severe joint pain that makes it difficult to walk, and it’s making it hard to get things done. All of these things make me feel lazy and useless, even when I know I’m not. I know it’s just my MS giving me a run for my money. Yet, whenever someone sees me, they tell me how good I look. Most in the MS community know that as someone with an invisible illness, that is one of the most frustrating comments you can get. People mean well, but they have no idea the mask we’ve put on just to look so “great”.

Putting on a brave face

The other day I was walking (more like waddling in pain) with my mom, and as we approached, the door people I hadn’t seen in a while commented on how good I looked. Don’t get me wrong, it always feels nice to get compliments, but little did these people know how exhausting it had been to get up and get ready that morning. Little did they know that before I got to the door to go inside, I told my mom that I had to put on my brave face and pretend like it didn’t hurt to walk. I’m not even sure why I told her that; I just knew that I’m so used to others thinking that I look fine that I didn’t know how they would react seeing me on a particularly bad day.

People don’t see the effort needed to look okay

People don’t see what it took to get ready that day. They don’t see how hard it was to put on that full face of makeup and how I had to sit on the bed just to put on my shorts. They don’t realize that behind the mask of looking good comes so much effort and many choice words. Remarks about how we look can be difficult. On the one hand, you feel great to know people think you look good, but on the other hand, it’s hard to swallow when you know how you look on the outside and how you feel on the inside don’t match.

Looks can be misleading

I am thankful that I can go out without people realizing I’m having a typically bad day physically, but I hate the feeling that my looks may be misleading. I want people to know that despite this illness, I have a lot of good days, but I also don’t want to lie about the fact that I have bad days, too. We all do. It’s hard to know how to look fine on the outside but also let people know that realistically, I’m not always fine. There are many days when I am struggling and in pain, but most days doing what I love and being out and about with my loved ones trumps all. It’s not like we intentionally hide how we feel either; it’s just sometimes easier to keep pretending than to take the time and let others in on whatever it is you’re facing that day.

Encouraging others with invisible illnesses

We don’t have to hide around others with invisible illness though. It is a community of people who know exactly what that feels like. Invisible illness is so misunderstood and not talked about nearly enough. I know there are many others out there who know what it’s like to feel like they are wearing a mask, too. That is why it is important that as a community, we continue to advocate, educate, but mostly encourage one another. Genuine, heartfelt encouragement is a gift. It’s not just a gift we receive, but it’s the gift that we can give to each other. It sounds cheesy, but it truly is the gift that keeps giving when it’s done in a genuine manner. This is something we can all do. We all wear our masks. It may not be MS, it may be something entirely different. But, I do know we all put on a brave face from time to time. So, let’s be there for each other. It’s difficult enough being told you look great when you feel like you’re dying inside. Be there for someone today, and know you’re not alone.

XOXO,

Calie

For Friends & Family: Your Friend’s Aunt’s Cousin’s Gardener’s MS

So you find out one of your friends, family members, coworkers, or acquaintances has been diagnosed with Multiple Sclerosis. It’s not a common disease, so your mind immediately searches for what you know about it and comes across a great factoid to share! Yep, you know someone else who has the illness! Your best friend’s aunt’s cousin’s gardener has it! Not only do they have the disease, but they’re also doing really well with it, too! I get it, it’s your way of trying to connect to us, it’s natural. As instinctive as it is to mention this connection, I want to clue you into a few things before you bring it up.

For Our Family & Friends: MS, Heat & Humidity

When I think about my life with Multiple Sclerosis, I often consider how much easier my life would be if there was a greater breadth of knowledge about the disease amongst everyone around me. If people knew a bit more about the disease, life would be better, not only for myself, but for my friends, family, and coworkers as well. A little bit of knowledge can go a long way. With that in mind, I’ve endeavored to create a few articles with some basic information about the disease and how it affects us. My hope being that these can be shared with our family and friends to allow them to better understand what’s going on with us. As I’m writing this first one in the middle of a crushing summer heatwave, I’ve decided to focus this first piece on the effects of temperature and MS.

The Bummer of Back to Back Days

Well, it’s here, the summer season has finally sprung (much to the chagrin of many people who have multiple sclerosis). With this season often comes vacations, day trips, BBQs, and all sorts of social activities and responsibilities.  No, this actually isn’t about the difficulties we face during the warmer tempsthat accompany this season.  While I want our friends and family to understand what temperature changes can do to us, I want to talk about another issue that tends to rear its ugly head this time of year. I’m talking about the difficulties we can experience when trying to do something on back-to-back days.