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Please Don't Say This Destructive Statement to a Person With Invisible Illness

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“You don’t look like you have anything wrong with you.”

This could be one of the most destructive statements to a person living with an invisible illness.

I have had it said to me thousands of times when I share my rare illness with others. Usually said with the best of intentions, but it can make or break a conversation about the illness.

As I write this and try to invoke my feelings on this one statement that I have heard so many times, my mind runs blank. It’s like my mind can’t even wrap around the statement. In the moment I usually shrug it off and either stop talking completely or try to explain further. Depending on the other person’s body language and tone of voice is when I will choose to dive deeper into the conversation. Now, as I ponder on it, it seems to just be an incredibly passive and un-empathetic observation.

Invisible illnesses are not so invisible to the ones living with them.

We see our invisible illness.

We see it when we look into a mirror. In every selfie we may take, we know what’s hiding behind those filters we use to try to hide behind. In every family photo we can zoom in on what makes us different. We sometimes shy away from the camera in this share everything world we live in, because we do no want to be reminded of what’s so obvious to us: our illness.

We feel an invisible illness. 

We feel the physical pain. We feel it every day. We feel the emotional pain. Sometimes it is more evident then the physical. We feel our family’s worry for us. We feel the guilt that we have because some days we wish we were more useful then what we actually were.

When you say to a person with an invisible illness that they look completely fine it can trigger a lot of feelings. The usually are negative feelings.

As a person living the invisible illness life it makes me question if I am just over-exaggerating my symptoms. That I just need to “suck it up” and stop complaining. I shouldn’t be this tired, I shouldn’t be in this much pain, because I look completely and utterly normal. 

That thinking can cause so much damage.

Just because we look healthy, does not mean we are not fighting a battle to keep ourselves healthy.

Originally published: October 17, 2016
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