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What I'd Do If I Knew I Wouldn’t Be Judged for My Illness

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What would I do with my life if I wasn’t afraid of facing judgment because of illness?

Just thinking about this is saddening to me. I live my life in virtually constant pain due to amplified musculoskeletal pain syndrome (AMPS). Because my pain is something people can’t see, I am often in situations where misunderstandings can easily turn to judgment.

For me, invisible illness has always been shrouded in judgment. No matter how hard I try to preach the mantras of not caring what other people think, the stigmas around chronic and invisible illnesses do hurt. It changes the way I live my life. This is what I would do if I knew I wouldn’t be judged because of my illness.

Simply put, I would do more. Let me explain.

People often judge by appearance. Whether it’s right or wrong is not the point. The point is that we are a society that judges and assumes a lot of things simply based on what we can see. When people see me doing “normal” things like shopping, running errands, exercising, going to church, or attending social functions, many assume that I am feeling good. I am often a recipient of remarks like,

“You look so good today, you must be feeling better!”

“Are you feeling better now that you’re out and about?”

“Now that you’re exercising, you must be better!”

What people don’t realize is that I’ve spent the last two years of my life learning how to hide the pain. I know how to look like I’m feeling OK. I know how to do my make-up to hide my swollen, tired eyes. Even on my good days, I’m going to be in pain. So, I learn to function despite the pain, clinging to any traces of normality I have left. To raise my quality of life, I have to overdo it sometimes and push myself because being truly “better” may never be a part of my reality.

People judge me for that.

I try too hard sometimes, and people don’t understand that. If I look and sound “better” and then I overdo it, there is little understanding for me then. My condition is so unpredictable, I can go from handling the pain to completely debilitated within seconds. When that happens in public, I either look weak for not trying hard enough, or I look stupid for trying too hard.

I fear judgment and misunderstanding when I tell people my limits or cancel plans due to my illness. They point back to the smiles and the fun activities and say, “You were healthy when you did this before, why are you too sick to do this now?”

The truth is that I am never healthy. Some days are better than others, but I am never healthy.

The misconception that appearance dictates reality turns my better days into stressful days of dealing with people who are unable to understand I’m still sick. Even the well-meaning people who just want me to feel better again can be exhausting to converse with.

If I knew I wouldn’t be judged for my illness, I would do more without fear.

The better days would be a source of joy instead of a source of unnecessary worry. I could spend my precious energy enjoying myself instead of defending myself.

For now, I have no choice but to keep going despite judgment, since it will likely never be entirely dissolved.

However, I can do my part by graciously educating people around me that yes, I’m still sick.

I’m trying my best. And it’s going to be OK.

Originally published: May 14, 2019
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