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To the Ladies Who Judged Me Without Knowing I Have an Invisible Illness

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I felt as if you were jeering at me. I was within earshot when you commented on how “snooty” I looked.

I was wearing my favorite coat. I know it’s flattering and it makes me feel good.

You see, I don’t go out often. A trip to the hospital is a day out for me. In fact, those trips are frequent and my health limits many aspects of my life. I can genuinely say I spend more time at the hospital than I do socializing.

So yes, I made an effort. I wore my lovely vintage leather gloves too; an unexpected gift from a friend. These gloves remind me that kindness exists and I’m not alone.

And I wore my boots — the ones with heels. Not going-out heels, but heels enough to give me just a tad more confidence.

I also spent a lot of time looking at my phone. I wasn’t really doing anything, but I couldn’t bear the thought of eye contact or interaction with strangers.

I needed those things, that confidence, the distraction and reminder that I’m not alone because on previous visits to that hospital I have felt the opposite.

On one occasion I was hiding in a corner, shaking and hyperventilating. I was unable to communicate or make eye contact with anyone. I was genuinely terrified to step foot outside my house that day. But I made it. I made it to the hospital. I made it through the appointment and I made it home again. That was an achievement.

I spend many days in my onesie, unable to raise my arms or hold them up long enough to brush my hair. I wish you knew how much effort it took to brush my hair and put on my boots today. You don’t know because you can’t see what it took to make my way to the hospital, the place that previously terrified me.

I heard you comment on the fact that when I moved to let someone sit next to their partner, I didn’t even smile at them. You’re right, I didn’t. I didn’t even try. I have (among other things) dystonia. It’s a condition affecting my muscles. Essentially, my brain can’t control my muscles properly. Although dystonia can affect people in many different ways, for me it affects my neck, shoulders and primarily my face. I think I’m sending one signal (e.g. “smile”) but my brain goes, “Nah, let’s do this instead.” The facial spasms that result are painful and exhausting. Whenever the affected muscles are untreated, that’s what happens to my face.

That’s why I was at the hospital today. Without treatment — and whenever it wears off — one side of my face pulls with such force that on the opposite side I now have a jaw disorder which is commonly caused by car crashes or other high impact accidents. My face has done that all by itself. The other side of my face is pulled so tight it doesn’t move, so essentially I look like I’ve had a stroke. So yes, I often decide not to smile. You don’t know because you can’t see.

I’m also painfully aware that until I smile or talk I look “fine.” Such can be the case with an invisible illness. It is a significant mismatch between what’s going on inside my body and what others perceive. And while I may flush in embarrassment at the sly glances I spot in my peripheral vision while I’m busy “looking snooty,” it’s preferable to the  pity I feel when others suddenly become aware of  the dystonia on my face. I can often tell the precise moment when the switch happens. I’m in my 30s, and I suspect I’ll be seeing it for the rest of my life. Even worse, people occasionally feel uncomfortable and redirect their conversation to the person I might be with. I am still me, in this misbehaving body. I’m still intelligent. I’m still an extrovert at heart, a warm and friendly person. But my body lets me down. You don’t know because you can’t see.

For me, it’s painful to smile. Talking is agony. Before saying a word or attempting a facial expression I have to consider whether or not it will be worth the pain and fatigue it will cause. Imagine that smiling hurts; that talking hurts. What if you were to spend just an hour in someone’s company with those things in mind? This is me. This is the rest of my life. I have to make decisions about the comments I make or the people I greet. I even have to consider talking to my son, is it “worth” instant pain and hours of fatigue? Thankfully, he’s understanding because of what he’s seen me go through. It’s usually him who makes those decisions for me, because he knows I’ll naturally always put him first. He’ll say, “It’s okay mum, we don’t have to talk,” when he sees me struggling. I’m so proud of him. He’s caring and compassionate. He understands. Unfortunately not everyone does.

So, to you two ladies, there’s just one thing I want you to take from this: please don’t judge; you don’t know what you can’t see.

Follow this journey at Wonk & Warpaint.

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Originally published: March 15, 2017
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