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People Are Discussing Their Amputations With #MyPhantomPain

"Phantom pain doesn't have one narrative."

This is model and blogger Mama Càx. After being diagnosed with bone and lung cancer at 14, Càx beat the odds with experimental drugs and a leg amputation.

Since then, she's traveled to five continents, amassed nearly 80,000 Instagram followers, and appeared on BuzzFeed and Refinery29, among others.
@mamacaxx / Via instagram.com

Since then, she's traveled to five continents, amassed nearly 80,000 Instagram followers, and appeared on BuzzFeed and Refinery29, among others.

But Càx still gets phantom pain — pain in limbs no longer existing after being amputated — and was recently inspired to learn about others' experiences with it, too. That's why she created #MyPhantomPain.

@mamacaxx / Via instagram.com

"Phantom pain doesn't have one narrative," Càx told BuzzFeed, "so I gathered stories from several amputees I follow on Instagram, amputated under different circumstances, and coming from diverse walks of life."

"I wanted other amputees to see that we all experience phantom pain/sensation in different ways, and use different methods to alleviate the pain."
@mamacaxx / Via instagram.com

"I wanted other amputees to see that we all experience phantom pain/sensation in different ways, and use different methods to alleviate the pain."

Responses came from Instagrammers including @amputeen, whose "phantom" experiences are sometimes painful, but not always...

"When I first experienced a phantom sensation, it wasn’t necessarily pain," she told Càx, but noted she's since experienced everything from intense itching sensations to excruciating burning. She said she treats the sensations with baths, massages to the "red balloon" she feels around her amputated foot, and cannabis.
@amputeen

"When I first experienced a phantom sensation, it wasn’t necessarily pain," she told Càx, but noted she's since experienced everything from intense itching sensations to excruciating burning. She said she treats the sensations with baths, massages to the "red balloon" she feels around her amputated foot, and cannabis.

... @ash_unique_chick, who also describes burning and itching in addition to shooting pain...

"I find that massaging my residual limb helps as it helps me to forget about the phantom pain," she told Càx, "or wearing a compression sock also helps with the pain."
@ash_unique_chick

"I find that massaging my residual limb helps as it helps me to forget about the phantom pain," she told Càx, "or wearing a compression sock also helps with the pain."

... and @amputee_kat, who experiences different forms of itching and shooting nerve sensations.

"It can be a few seconds or all day and it can be hard to concentrate on anything else," she told Càx. "I find that breathing, and rubbing my legs helps, really massaging through the nerves. Another tactic is running warm water from a shower head over my stumps."
@amputee_kat

"It can be a few seconds or all day and it can be hard to concentrate on anything else," she told Càx. "I find that breathing, and rubbing my legs helps, really massaging through the nerves. Another tactic is running warm water from a shower head over my stumps."

Overall #MyPhantomPain achieved its goal of showing the diverse experiences of amputees, although Càx says she was disappointed in some responses she felt romanticized disability.

"I saw comments on how people wanted to pray for me, and how reading this in the morning gave them the courage to tackle their day," she told BuzzFeed. "On their end it's probably coming from a good place, but it's almost insulting... Those women don't need people telling them how they are strong or courageous; I'm sure they know that."
@mamacaxx / Via instagram.com

"I saw comments on how people wanted to pray for me, and how reading this in the morning gave them the courage to tackle their day," she told BuzzFeed. "On their end it's probably coming from a good place, but it's almost insulting... Those women don't need people telling them how they are strong or courageous; I'm sure they know that."

"All in all, I'm glad I wrote it," she said. "Those who needed the information will benefit from it. Personally, I will be trying some of the methods the other women shared."

You can see all the responses to #MyPhantomPain here.
@mamacaxx / Via instagram.com

You can see all the responses to #MyPhantomPain here.

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