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4 Reasons I Don’t Want This New Ice Bucket Challenge to Go Viral

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Have you heard about the new ice bucket challenge? I have, and I’m not thrilled!

This challenge is meant to raise awareness about the pain people who live with complex regional pain syndrome/reflex sympathetic dystrophy (CRPS/RSD) endure. It attempts to proxy, for just one minute, what someone who lives with CRPS/RSD confronts on a daily, minute-to-minute basis.

Here are four reasons I don’t want this ice bucket challenge to go viral:

1. I don’t need anyone to experience my pain to empathize with me.

My pain has influenced me in so many ways.

Some people are thankful for their pain. Others have learned valuable lessons about determination and persistence from their pain experiences. Some people feel (absolutely legitimate) resentment or repugnance when they think about their pain or their bodies. I’ve written on all those things — my words should be piercing enough!

The main objective of this challenge is to simulate what CRPS/RSD feels like. I don’t believe anybody needs to experience this singeing discomfort for one second (not to mention an entire minute) to be empathetic. Chronic pain is real. It’s not glamorous or something you try for a minute, recover from and then extrapolate the feeling to imagine it across a lifetime.

Full stop.

2. I wouldn’t want anyone to experience such an excruciating feeling.

Even on my best day, I wouldn’t wish this pain upon anyone. I believe shared experiences bring people together and connections are fortified through a shared struggle or challenge. I believe this because I think out of struggle comes strength and resiliency. These qualities allow us to connect more authentically with others who share aspects of our stories. Take it from me, people who live with CRPS/RSD should be revered! That being said, I can hardly imagine inflicting pain on anyone in the name of awareness is the best way to advocate for our experiences. I’d prefer a challenging conversation based on a foundation of respect and care. It hurts my heart (a different kind of hurt) to imagine another person voluntarily choosing this pain so they can really understand.

3. This is really triggering for me.

When I was in high school, I was a patient at an intensive, rigorous, four- to six-week rehabilitation program for teens with chronic pain. The ideal candidate has exhausted all other outpatient treatment options and has pain that significantly impedes their daily functioning. That was me! Twice! (They call those people “repeat offenders.”)

At the clinic, I gained functionality. My mom still cries thinking about the first time I ran after years of dragging my right leg as opposed to walking. I also created friendships I never expected would change my life. My RSD sisters are the people I call during a flare and the only people in the world who understand a pain so deep words cannot describe. The program is an incredible second (or third) chance for many people. It was also the worst 12 weeks (cumulatively) of my life. Many of us block out our time there. It’s simply not something we talk about once we’re out of the program.

In order for the program to work, you must do the things that hurt you the most. It’s absolutely twisted. The idea is, you’ll retrain your nerves, body and mind to respond appropriately to a variety of stimuli and physical exercises (I’m getting sick just writing about this). Ultimately, you’ll reacquire normalcy and the idea is to be pain free.

One exercise that was particularly challenging for me was contrast baths. They were comprised of alternating three-minute cycles of soaking my legs in ice and warm water. To endure possibly the most undesirable task of my life, I developed the motto “I can do anything for the length of one song.” Fergie’s “Here I Come” was the only song that successfully propelled me through. I can’t listen to that song anymore, but the mantra is something I still employ during tough situations.

ice bucket challenge image
The challenge post Melissa saw on Instagram.

When I saw this picture, a rush of emotions came over me. I was scared, overwhelmed, upset, empowered, angry and hurt. It’s difficult for me to imagine that one of the most traumatizing, painful things in my life is what other people are being encouraged to voluntarily experience so they can better imagine a lifetime of CRPS/RSD pain. To this day, I cringe at the site of an ice pack. I get chills and a physical response recalling the fear and sobbing associated with the inexplicable pain that was an integral part of my treatment plan and meant to make me better.

4. CRPS/RSD isn’t that simple — everyone’s pain is different.

CRPS/RSD inflicts emotional pain and physical pain that can manifest differently for every person. I understand how this exercise might demonstrate CRPS/RSD pain, but in real life the experience is much more dynamic and multidimensional. I think it’s too simple to imply that if someone holds their hand in a bucket of ice for a minute they’ll “get it.” Which brings me back to my original point: I don’t need anyone to experience my pain to believe me.

I won’t be sharing this picture. If someone else is empowered by this image and its message, that’s great. I want people’s voices and experiences to be visible. I am a huge advocate for awareness — that’s why I write! However, this particular advocacy effort is really unsettling to me.

Follow this journey on I’m Probably Overthinking This.

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Lead photo source: Thinkstock Images

Originally published: March 4, 2016
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