The Masks We Wear
The masks we wear come in all shapes and sizes, and much like the mask in the movie “The Mask” they adapt to our needs and can look like anything. I wear a lot of masks throughout the day. Each one helps me with certain areas and aspects of my life where I need to wear a bit of a disguise. These are some of the masks I (and I'm sure you) wear on a daily basis.
The mask of health
“How are you doing today?
“Oh, I'm fine”
I have a few reasons. The first being, I don’t want to bother them with my pain. Truthfully, most people don’t actually want to know how you are doing, it is just one of those things people say as a greeting and to show a little interest. Answering with, “I'm in more pain than you can possibly imagine!”, is going to lead to a very awkward situation. (Although, I encourage everyone to try that, and report back to me their findings)
The other main reason for the lie is to avoid any kind of follow up questions you don't want to answer, or the dreaded “Have you tried…” response. I have found most people fall into either category, they don’t want to know, or they want to fix you. And, I just want to drink my coffee and be on my merry way.
The mask of happiness
Working in an elementary school, especially, I wear this mask a lot! This is the mask of looking good, even when you aren't feeling good. Keeping a smile on your face and a spring in your step when all you want to do is frown and limp. Now, understand, there are some days the strap is broken and I can not keep this mask on. My pain shows in my face, my back can’t stand straight, and I shuffle a little when I walk.
But, when there are kids around, or people who need to see a little joy and strength, I secure that mask to my face. Kids need to have a positive environment, especially in school. If my mask of happiness helps get them through the day, it's worth hiding my true self. The other reason for the mask is, I don’t want to be “the grumpy old man.” Everyone who knows me knows this is not my true persona. However, people are also quick to judge. If you look like you are upset, people are going to assume you are unfriendly and not to be spoken to.
I took this mask off for a little while once, and you better believe it didn’t take long for people to start calling me out on being grumpy, grouchy, and all-around pissed off at the world. I wasn't, I was just letting my pain show, and too many people took it the wrong way.
The mask of having it all together
Spoiler Alert: Most of us are far from “having it all together.” Ankylosing spondylitis is not easy to understand, treat, or live with. It is an up and down blind turn rollercoaster that we don't know when it will ever slow down.
We go into doctor's appointments not knowing how it will turn out. We take meds that may or may not work. We will feel “fine” one day and then feel horrific the next. We have no idea what will happen, how we will feel, and how long it will last. However, like with the Masks of Health and Happiness we wear it to protect the others around us, along with ourselves.
Nobody wants to feel like they don’t have a handle on their life, so they put on this mask to pretend that everything is great and nobody needs to worry about us. “The treatment will work”, “My doctor has a good plan”, “All I need is a few hours sleep and a heating pad.” We need to look in the mirror and feel that the ride is smooth sailing and all our items are secured, even though we know there could be a major dip upcoming.
Taking the mask off
This is the difficult part, especially for those who have been wearing these masks for so long they have become a part of our face. I am an educator and I believe in the free flow of knowledge. I believe nothing good comes from keeping secrets and if there is to be any change in the world, we need to stop hiding.
Ankylosing spondylitis is not a rare disease. It is just not very well known. And, nobody is going to know anything if we don’t take off our masks and let people know what AS looks like. Yes, there are times when wearing the mask is the best choice. For example, not letting your boss see you are having trouble keeping up, or keeping a happy face for children and others who couldn't handle the truth. These are perfectly ok in my opinion.
But, in the quest to be open and honest, I have started answering “How are you?” With, “I'm terrible, this weather is really hard on my back”. And, you know what happened? People have started asking questions, and I have informed them about ankylosing spondylitis. A few have walked away, and a few provided unsolicited advice, but that is their loss.
We all wear masks, but don’t let that keep people from knowing the real you.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?