I sat in my car for a good 10 minutes while having a ridiculous internal struggle in my mind, before I mustered up enough nerve to get out of my car in the grocery store parking lot…
Me, arguing with myself inside my head:
“OK, I’m here and I’ve got my face mask ready to go.”
Stares blankly at the mask.
“At least it’s pink.”
“There are tons of cars here, maybe I should come back later.”
Fumbles with the mask in my hands.
“Stop worrying and just put the mask on.”
Puts the mask on and adjusts it on my face and messes with hair.
“Yep. Everyone’s definitely going to stare at me.”
Anxiety builds quickly.
“I feel like I can’t breathe with this on.”
Sweaty, panicky and hot.
“Calm down. Slow your breathing. Focus on why you are doing this.”
“You got this. You have to do this for yourself. Just get out of the car.”
Quickly gets out of the car. Anxiety.
Stares at reflection in the window.
“No turning back now.”
Peeks around corner of the car.
“Why is the whole world at my grocery store right now?!”
Walks towards entrance avoiding eye contact with everyone.
Grabs cart, turns it around to get inside the store. Almost collides with a woman putting her cart away.
I exhaled and it felt like she and I froze in time while the world around us kept moving. I felt stuck, like her staring eyes paralyzed me. I could hear my heart beating out of my chest. She sees me. Me, the sick girl. She sees me.
I guess I can’t say that I saw that going differently in my mind. I guess that I hoped wearing my face mask in public for the first time would feel less like a nightmare and more like… I don’t know, just another day at the grocery store.
Maybe “nightmare” is a tad extreme. But here’s the naked truth — I have never… ever… felt so vulnerable, so exposed, in my 13 years of having autoimmune disease/chronic illness. Anxious. Nervous. But above all, incredibly vulnerable and exposed. So much so, that my invisible illness didn’t feel so invisible anymore.
Recently my rheumatologist and primary care physician had a “heart-to-heart” with me about how often I get sick and what we can do to help keep me healthier. Because, you know, getting the flu, strep throat, walking pneumonia and having chronic sinusitis and chronic allergies isn’t the greatest thing for my nonexistent immune system. I do everything I can to be as healthy as possible, but regardless, getting sick every couple months keeps happening. It hinders my already reduced quality of life. Hence the face mask. After gentle nudging from my doctors I agreed to give it a try.
A blessing and a curse about autoimmune disease/chronic illness is that it is “invisible.” Especially to people in public who don’t know me or don’t know that I have a chronic illness. It’s sort of like a security blanket that I wrap myself in, that helps me feel and appear “normal” out in public. Wearing the face mask rips that blanket off of me. No place to hide. No safe place. Nothing protecting me. No comfort. No more faking “normal.” Everyone can see the sick girl…
I imagine I feel these things because I’ve been able to “hide” for so many years. Sure, there are numerous people I see on a daily or weekly basis who know I have an autoimmune disease/chronic illness. But those people are my loved ones — family and friends. They have compassion and an understanding of my fight. I trust in them.
It’s a completely different dynamic when it comes to the general public. Let’s face it, the majority of people who do not have a chronic illness (or haven’t been exposed to someone who has one) isn’t going to know what to make of the young woman wearing the face mask who looks “normal” other than the fact that she has a face mask on.
And that’s one of the most challenging things to deal with as the one behind the mask. They don’t understand why I’m wearing the mask, and don’t think about how their stares or comments affect me. I’ve heard people make comments like, “Why is that girl wearing a mask?” And, “Something is wrong with her.” It makes me feel misunderstood and judged. Which is a horrible feeling to have when I already had to muster up a lot of courage to wear it public in the first place. The lack of compassion is so disappointing.
Another aspect of this challenge is not knowing how someone is going to react to seeing me in the mask, and/or what someone might say to me or ask about. Furthermore, how those situations may make me feel and how I respond.
Since my first time wearing it to the grocery store I have worn it to a couple of retail stores, the bank, grocery store again, and most recently the airport/airplane. Unfortunately, the most common experience has been being stared at, judged and misunderstood. I even had a flight attendant ask me, “Are you OK?” as she pointed at my face mask. Poor word choice, “OK,” to direct toward someone who is chronically ill. Why would she (especially a flight attendant) make the assumption that in some way I must not be “OK” simply because I have a face mask on?
I have only had one pleasant experience so far — it was with a TSA agent. I was in line to go through the metal detector wearing my Wonder Woman face mask when the agent said “Wonder Woman, I like that face mask!” I had been avoiding eye contact with everyone, but when he said that I smiled and said thank you. I proceeded to set off the metal detector, per usual, so I told the same agent that I have metal hips and wrist. He replied, “Wow! You really are Wonder Woman!” I laughed with him and thanked him again. I don’t think he realized how much his human kindness helped me feel less anxious and more comfortable in that moment.
My hopes in writing this blog is that it helps others in the autoimmune/chronic illness community who may be having similar experiences. Maybe it provides validation to someone that they aren’t alone — that we can relate to one another, and get through different or similar struggles together. By wearing the face mask, I hope that it helps create awareness in the general public for invisible illnesses.
Wearing it has been a challenging experience, but the benefit far outweighs the negative — the benefit being my health. My health always should and needs to come first — I cannot let the negative dictate the choice to be healthy. Even though I’m feeling not so invisible now, I know that in time I will become more comfortable with my illness being “visible.” I’m just not there yet…
This blog was originally published on Dina Neils: Titanium Triathlete.