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

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A Letter to Myself on the Day of My Diagnosis

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Nora,

Today’s a big day for you. You have been waiting for this day for years.  You have been in pain for almost two years now with no diagnosis. As you pull into Children’s Hospital of Pittsburgh and check in for your appointment, you have a million thoughts running through your mind. You sit in the waiting room in front of the diagnostic center for complex medical conditions, and you’re wondering, hoping and praying you will leave with a diagnosis.

You go into an exam room and the doctor comes in. She is the most thorough doctor you will ever meet. You will be asked a million questions, she will examine you, and then she sits you down and says, “You have RND.” What on earth is RND? She explains it is reflex neurovascular dystrophy.

You will start a physical therapy program as suggested by The Children’s Institute, and you will be sent to children’s pain clinic.  Don’t worry, the team is absolutely amazing. The whole team will suggest more physical therapy and medications to try, and you will also be told you have complex regional pain syndrome (CRPS). Don’t be confused; this is not another diagnosis, but another name for RND.

You will start an intensive physical therapy program. You will be there four hours a day, four days a week, plus a home exercise program. Let me tell you, it will be brutal, and you will be pushed to your limits, but trust me, the physical therapist knows what she’s doing. Although your pain won’t decrease by much, your functioning will improve.

Because of all the time spent in PT, you will be on homebound the spring semester of your senior year. Despite the odds, you will still graduate with honors and a 4.2 GPA. It will be the proudest moment in your life. You will spend the rest of the summer in PT, and you will move into college, only to be put in a boot in September. You will have some rough moments after that. At an appointment with your doctor, you will receive some of the worst news of your life. You will go into that appointment with severe pain that he can’t relieve. You will feel your heart break inside of you, and any last bit of hope you had for pain relief will be taken away. It will take everything you have not to cry, but you will the entire way home.

I can’t tell you if you will ever be pain-free, because as I write this to you, I sit here in severe pain. But as you go through life, you will push yourself harder than you ever imagined. There will be days when you feel like you can’t possibly move on, and there will be days that you just want to give up on everything.  You will have people talk about you, behind your back and to your face. You will have people tell you that you are a hypochondriac and doing this for attention. Not only will these comments come from your peers, but it will come from a few of your family members, and believe me, it will hurt!

If I could give you any advice, it would be not to stress. Everything will work out. Just believe in yourself and try your hardest.  Don’t look back on the bad days; just look forward to the great ones ahead of you!

Nora

girl sitting on the train tracks, smiling and looking at the camera

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To the Little Girl Just Diagnosed With Complex Regional Pain Syndrome

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I know what is going through your mind. You’re scared and confused. You just had all these large terms thrown at you and you don’t even really understand everything that was just said. It is going to take a while to process everything and even then, you may not fully understand what is going on. Your parents may not even understand, and that’s OK. That’s the way complex regional pain syndrome (CRPS) is: confusing. You will learn along the way while you experiment with treatments. You have probably been to many doctors before this with no answers. You feel relieved that you finally do have an answer, but nervous about what it will bring. It seems like it’s too much for a little girl to deal with. Nobody should have to deal with it, but only the strongest are chosen to have it.

You’ve missed days, weeks and even months of school going to doctor after doctor and you’re going to miss more. You have lost a few friends along the way and it’s going to happen in the future. Don’t worry, your true friends will stick around, and that’s who you’re going to rely on. There are going to be days when you feel you just can’t possibly move on, but you do it anyway. Not because you have to, but because you choose to. Sometimes nasty things are going to be said about you and that’s hard enough for anyone, let alone someone who is going through what you’re going through.

Here is some advice I learned along the way I wish I had known at the beginning. You are stronger than this disease and you are in charge! Don’t
ever think you aren’t. Be open about it to anyone who will listen. There are going
to be a few people who really don’t care about what you have to say, so when you
find someone who’s willing to listen and tries to understand what you’re going
through, take the advantage and talk about it.

Not only will it help you feel better, but you just informed one more person about a disease not many know about, and they are going to go home and tell their family. Dealing with CRPS will really teach you sympathy and compassion for others. This is a great quality to have in the world we live in today.  If people don’t believe you, don’t listen to them. You know just how real it is and just because someone is being difficult about it, just move on and don’t think about it. Find the best possible doctor you can find to treat you. If you don’t like a certain doctor, find a new one. You deserve the best care possible and it’s OK if it takes a few doctors before you find the one that’s right for you and you are comfortable with.

Whatever you do, don’t sweat the small stuff. Your nerves have enough on their mind while dealing with CRPS. Same goes for any stress you have. Everything will turn out OK, even if it’s not how you planned it to be. I cannot tell you how many plans I had for my life that got changed, but you will eventually end up where you need to be. Each day is a new day; don’t let the disappointments of yesterday affect your today. There will be bendy roads ahead and there will be hills steeper than you ever imagined, but once you reach the straight way, you will look back and be amazed at how far you have come!

young woman lying on stomach in front of trees

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To My Loved Ones When I ‘Fake It’ Through My Chronic Illness

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My loved ones, there is no way to put into words how much I truly appreciate you. All the things you do for me, no matter how big or small, I can promise you they don’t go unnoticed. I can count on you for a shoulder to cry on or a laugh when I’m at a low point. You watch me suffer day-to-day. Through my struggles with complex regional pain syndrome (CRPS), postural orthostatic tachycardia syndrome (POTS), depression, anxiety and so much more, you have watched my world turn upside-down. You see me at my worst and you think you see me at my best. Although, on those days that you watch me smile, laugh and seem fine, the truth is that smile is painted on my face, and that laugh is fake. In fact, that laugh is taking every last bit of energy out of my body. I can’t remember the last time I felt 100 percent. I’m not saying everything I do is fake and I never am truly happy, I’m just not as good as I may seem.

It is my reality, and it is something I am used to. I don’t want pity, nor am I after sympathy. Coping with chronic illnesses, I’ve learned that sometimes it is easier to make my life more difficult than make others upset. I’m sure that’s hard to wrap your head around. Why would you put yourself through more hell than you have already been through? Rewind to the first sentence when I said I truly appreciate you. That is exactly why.

I appreciate you more than you can imagine. When I see you are upset from my condition, it backfires and makes me upset and frustrated. It makes wish I could pull out a cape, suddenly have superpowers and make it all go away. Sometimes it’s easier to keep how I am truly feeling to myself. It is uncomfortable to communicate to you that I am not as good as I may seem. Then when I see the heartbreak in your eyes and that helpless “I wish I could help you look,” I feel as if I have just shared with you what I feel day-to-day. I wouldn’t wish anyone to feel what I feel every day. Whether it be physical or mental pain, I wouldn’t wish it on my worst enemy. Your support and wanting to know exactly what I’m going through is nonetheless comforting, although I hate the days you watch my smiles fade to frowns and my eyes have little rain showers. I hate that you know I’m suffering.

back view of two women with arms around each other
Anna and a friend

If I give you that glimpse of my life that leaves you in a dark place, I feel as if I failed. It is my mission and my focus to be stronger than chronic illnesses. Although there is no superpower cape I can put on and make everything go away, I feel as if I have developed my own human superpowers after suffering for so long — superpowers that give me the ability and strength to fight, and to not let my illnesses define me.

What can those loved ones I appreciate so very much take away from this? It is no harm to me to know you are thinking of me, support me and are there to cheer me up when I need it. But sometimes I need you to look no deeper than the surface. When I have a smile on my face, whether it is painted on or not, this is my way of showing that right now I can handle what is going on in my life on my own. It is my way of protecting you. Don’t get me wrong — there will be those days when I need that shoulder to cry on and those open ears to vent to. Just please know how to read me. If you feel as if I’m not “letting you in” on an emotional level, it is simply my way of saying I got this, I can do this, and thank you.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Day in My Life With Complex Regional Pain Syndrome

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I, like many others, had never heard of reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) until it actually happened to me.

After the third doctor I went to said that is more than likely what I had, I remember Googling it on the ride home. After many tests and even more treatments, I was diagnosed with this mysterious disease, but I still wasn’t sure what was happening to me. I have done a lot of research, and I am still learning new things every day. In my experience, most doctors do not know very much about RSD/CRPS, so how can other people?

In the world of invisible illnesses, it is almost impossible for people without them to know what it is like to be you. I look fine. I look like a 30-something woman who is going about her day. I may look a little strange because I am pretty much always carrying my right arm around, but for all intents and purposes, I look “normal.”

Now let me tell you the real story. If I am out of the house, I probably have makeup on or my hair looks halfway decent. To look halfway decent required a lot of effort. I winced, took breaks, sighed and cursed the pain gods many, many times. I am also sweating from not only the effort but from the pain. To top it all off, I am nauseous, because I am nauseous almost every day. Yay, now I can leave the house. If I am riding as a passenger in a car, I have to deal with a passenger-side seat belt. This is constantly a problem because if the seat belt touches my collarbone, it hurts, and then causes a domino effect, making my pain worse than it already is. Let’s say I get to my desired location — now I will carry my RSD-affected right arm around with my left hand. I have been doing this for what seems like a long time, and the reasons are: because it hurts just hanging there, I feel like I am somehow shielding it and I am likely having a tremor.

You may see me out in a store or at the library, and I may seem fine. I am not. I am screaming on the inside. I am trying not to think about the pain. I am on fire, but you can’t see my flames.

A lot of the time staying at home just sounds so much better. But, the same thing happens no matter where I am.

So I have painted a slight picture of what I deal with, and now I want to talk about listening. People who do not have RSD/CRPS do not know what it is like. I constantly hear other people tell me their arm, leg, finger, toe, head, neck, etc. hurts, and I am positive it does. Does it feel like you are literally on fire and there is nothing you can do about it? Probably not. Does it feel like you have 10,000 angry fire ants crawling in your veins? I hope not! Does it stop? I really hope it does.

Mine does not.

There are days when the fire is a slow-burning flame and the ants aren’t as angry as before, but it never goes away. There has never been a day when the swelling wasn’t pulling at my skin, or the intense throbbing wasn’t another heartbeat I was feeling. There isn’t a day when sitting in a chair or lying on a bed wasn’t causing me actual pain. When I make a passing comment of “my arm/shoulder hurts,” it doesn’t just hurt — that’s just all I said.

Sometimes people with these invisible illnesses just need to be heard. I know I try to explain it to those around me, and even though they may try, they do not know. There is no way to know unless you live it. I know I am seen as ungrateful, a complainer, lazy, and that I exaggerate, but those people don’t know. I am glad they don’t know the hell I live in because I wish I didn’t — but they also don’t listen. They hear you, but they don’t listen.

In life people generally just want to be heard. People with chronic pain need to be heard. We need to tell people that something hurts without hearing back that something on that person hurts, too. We aren’t being narcissistic, or at least we are trying not to be, but it’s not the same. We don’t know the pain you are in, but you most certainly do not know the pain we live with every second of every day. We all just need to listen more, and those without chronic pain also need to understand more.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When People Ask How I Do My Job With My Chronic Pain

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I was diagnosed with complex regional pain syndrome (CRPS) when I was 13 years old, back in 2000. I didn’t have anywhere to turn or any peers that were going through the same things. It was really lonely. Your teen years are already confusing enough, but add to it a chronic illness that is not understood — that made it all the more lonely for me.

In my junior year of high school, my guidance counselor asked me what I wanted to study in college. I had thought long and hard about it, and wanted to do the same thing my sister was studying in college: recreation therapy. I wanted to work with people with disabilities and help them be as independent as possible in their leisure and recreational pursuits. So that’s what I did. I studied at the University of New Hampshire and graduated in 2008.

I currently work at a wellness center that has a special needs department. I’m the program manager. I plan and organize all the groups that are offered to our participants, and even run a few groups here and there. We offer music therapy, art, adaptive karate and Zumba, as well as social groups for different ages. It’s my passion, and I can’t imagine doing anything else. Even on my miserable pain days, I love going to work. Watching a participant bowl a strike or to listening to a parent share how their child has never felt included until they started attending our program warms my heart and reminds me why I love doing what I’m doing. I fight through my own pain so I can help my participants flourish, make friends and not feel so alone, like I did at their age.

woman playing on playground
Kerry at a playground

People ask me all the time how I can do the work that I do — that it must be so stressful on my own body and must take so much out of me to work while in pain. They’re right. My body doesn’t handle the stress of work well, and I’m exhausted by the time I get home at the end of the day. But to see the smiles, receive the hugs and witness growth of those that I work with makes all my added pain at the end of the day worth it.

I’m not saying my days aren’t difficult. They absolutely are. The way I look at it, however, is that I’m helping our participants, but they are also helping me. They give me a purpose. They help push me when I feel like my pain is too high, because they’ve shown up to group meetings after the pain of struggling with bullies at school all day. They may not know that I have a disability, but they encourage me every day to keep going!

I don’t know if my career path would have been the same had I not been dealt a hand that included a chronic illness. However, even on my worst days, I’m glad CRPS came into my life. It’s given me an understanding of the ups and downs of having a disability, and it’s given me a desire to make sure people are included and don’t feel so alone in the world.

woman in fruit orchard
Kerry picking fruit

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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