Living With Chronic Pain: How A Lack Of Awareness Can Lead To Di - 47 ABC - Delmarva's Choice

Living With Chronic Pain: How A Lack Of Awareness Can Lead To Discrimination

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HARRINGTON, Del. - It's not everyday you see someone walking around wearing industrial grade headphones, sunglasses and a scarf wrapped around their face. But for 34-year-old Autumn Stevens, that's the only way to help ease the pain.

"I look crazy to people. You know, it's like, what's wrong with her?" she said.

Autumn suffers from Complex Regional Pain Syndrome or CRPS – formerly known as Reflex Sympathetic Dystrophy or RSD. It's a chronic pain disorder that can be characterized by a severe burning pain, excessive swelling, extreme sensitivity to touch and discoloration of the skin.

"At the Royal Farms and Wawa, they have music playing outside when I pump my gas, so I have to put these (headphones) on. The music is absurdly loud. There's a big fan that blows when you open the door. Most people might not notice, but there's this big fan. It's very painful," she said.

"Pain is almost always the first symptom. You can have swelling; you can have temperature changes where the effect of them is either much hotter or much colder than the opposite part. You can have color changes. I have a woman right now— one foot is almost purple compared to the other side. You can have hair growth changes. In a female, hair grows on one leg and doesn't grow on the other. Nails either grow much faster on the opposite side or much slower. Any of the sympathetic functions go out of whack," Assistant Professor of Medicine & Neurology at Drexel School of Medicine Dr. Philip Getson said.

Eating something spicy, certain smells, bright lights and even taking a simple shower can send a shooting pain through her body.

"At registers when I know that they're going to slam the drawer shut, and I know they're going to take the roll of pennies and crack it on the register, I back up. That's my way to adapt," Stevens said.

But her biggest struggle— getting people to believe she is suffering.

"I'm viewed as having a mental problem, or like I'm crazy, instead of someone with a medical issue. It's almost more debilitating the way that people react to you. But if I walked in with a wheelchair or a cane, nobody would think twice," she said.

From disbelief to downright harassment and discrimination, she's had to endure it all.

"It's hurtful because I didn't ask for it, and I can't help it. When I walk out my door, they'll beep their horn or their car alarm as I walk past. Families and friends will just drop like flies. They think you're nuts too," she said.  

It's even a mystery to many doctors and can often be misdiagnosed.

"Most physicians have never seen it in their life nor treated it. Sometimes people are told that the pain is made up. Pain research is still not invested. Only one percent of every healthcare dollar spent on research goes into pain. And that's the number one reason we go to the doctor," Executive Director at Reflex Sympathetic Dystrophy Syndrome Association Jim Broatch said.

"The medical community is full of people who don't ever say well, I don't really know what's wrong with you. What they do say is, I've done all the diagnostic tests and they're all coming up normal. So since the diagnostic tests were all normal, it must be in your head," Dr. Getson said.

But through it all, Autumn has learned she needs to advocate for herself and teach her two children an important lesson.

"We don't treat people differently because they have something that we have never heard of or we don't understand," she said.

To learn more about CRPS or RSD, click here.

Autumn is working to raise awareness and wants to be an advocate for the disease. She's asking anyone who wants to help to contact her at 302-359-1286.

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