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3 chronic pain patients get painted to show their pain areas and talk about what chronic pain really means.

Transcription:

We look normal on the outside but we go through so much more than people can even realize.

What if we could see chronic pain?

I experience pain in my shoulder, my knee, and all along my spine due to a spinal CSF leak, secondary to Ehlers-Danlos syndrome.

I was diagnosed with fibromyalgia. It was the same time that I was experiencing an eating disorder.

i have kidney failure which is a life-threatening illness. I’m on peritoneal dialysis and sometimes air gets trapped inside the body.

Feels like numbness and then it burns.

In my chest it’s more of kind of like a tightness.

Kind of cramping and just super uncomfortable.

My arms is more like a piercing.

It feels kind of like aliens or something is trying to crawl out of my abdomen.

I wish they knew that it’s a lot more common than they think. Just to get through the day and do normal things that people take for granted can be a really big challenge for people with invisible illness.

It’s debilitating at times and I have to cancel plans a lot and it’s frustrating because people don’t really understand that I’m not faking it.

You can’t tell that I don’t pee. You can’t tell that I have chronic fatigue, you can’t tell that I get out of breath if I even start jogging a little bit or walking up the stairs.

Try and be patient and kind when you see someone using the cart and they look like they’re 25 or 30 years old. They might be dealing with something similar.

Have empathy for everyone that you meet. You don’t know what someone is going through, whether it’s fibromyalgia or another kind of chronic pain situation.

I would say that in a very unusual way it has transformed me into the person that I am today. EDS and especially my spinal CSF leak have really taken me to a point where I’ve broken down to just my base foundation and I feel like I’ve been rebuilt as a much stronger human and a more authentic version of myself.

I think a lot of times when I try to explain what I’m experiencing there’s a lot of misconception or just non-belief, which makes the depression, for me, increase, because it’s like, “No one understands me!”

People don’t sometimes realize how severe it really is and they lack that empathy at times. But then there’s other people who empathize a lot and i’m really grateful for those people.

We shouldn’t need to paint our pain so our invisible illnesses are taken seriously.

Believe us, and be kind.

 

Visual concept inspired by Elyssa C.

Originally published: September 25, 2018
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