Your Story Matters

There are some days when I wonder why I am dealing with this pain. I question why I’ve been through so many challenges in my short life. Sometimes I get frustrated by of my present circumstances, thinking that I stumbled into a life of bad luck. But then I remember this: It’s not all about me. The struggles that I face have the potential to change the life of another person. Because of my pain, someone else may be able to receive a proper diagnosis. Because of my past, someone else may be able to find freedom from their addiction. If I have to go through the darkness in order to bring light to someone else, then I will gladly do so, because this life is not all about me.

When I was first diagnosed with RSD, I was in 8th grade. I had wonderful teachers who took the time to make accommodations for me when necessary. They asked how I was doing, offered to help, and extended grace to me for the many missed assignments. Because of my pain, they learned about RSD. About a year after I graduated from that school, my 8th grade teacher’s daughter began to have pain with no known cause. Knowing my story, my teacher brought up RSD, and soon her daughter was diagnosed. My parents and I were able to offer support and recommend a hospital that could help her. If I hadn’t gone through my own battle with this monster, I would not have been able to help that girl, and she probably wouldn’t have received treatment as quickly.

When I was 17, I graduated from a program that completely transformed my life. I entered the doors broken and lost in eating disorders, depression, anxiety, and a self harm addiction. Eight months later, I was free from those struggles and found myself sharing my story with others. There was a girl who happened to hear my story, and she ended up applying for the program herself. Although we had different issues, she was able to find her own freedom because of my brokenness.

In 2012, I received an email from my 5th grade teacher. While I hadn’t yet been diagnosed when I was her student, she heard about my story through my mom and other teachers after she left the school. She eventually changed career paths and went into the medical field. The email was to let me know that she was giving a presentation about RSD/CRPS at a large EMS Expo. She wanted to help spread awareness for this condition after hearing about my battle with it. I ended up going with her to the expo, and I was able to share my story with a room full of healthcare professionals. Each person in attendance was given an orange packet filled with information about RSD/CRPS and how to treat patients with the disorder. Because of my story, these medical professionals know how to handle complicated cases such as my own.

When I was first hospitalized for full-body RSD/CRPS in 2006, I had an amazing Physical Therapist. She spent so much time learning about this monster and figuring out how to treat me. About 2 years ago, she told me that she was working on her doctorate and was spending a whole term studying CRPS. She was able to learn more and teach other therapists about this disorder because of her experience when I was her patient.

Last year, I received an email that my dad forwarded to me from one of his friends. He was talking about how he had met a doctor  in the area who knew about RSD. This doctor used to work at a large hospital (*cough* The Worst Hospital Ever, if you’ve read any of my posts on that), but he has since opened his own pain center. He said that he had a young patient who was hospitalized for RSD/CRPS in 2006, and that it was partially because of this patient (uhh, that would be me) that he opened his practice. He hadn’t heard of RSD/CRPS until I was his patient, and he wanted to be able to help more people with their pain. So basically, my story led this doctor to leave the hospital setting, open up his own center, and treat patients with CRPS and other chronic pain. Woah.

These are just a few of the stories I’ve heard/experienced of ways my story has impacted others. I’m not saying that I’m the magical missing piece in these stories. It’s possible that these situations may have had the same outcome, even if I was never part of the picture. However, the fact that I was able to play a role in the help and healing of others makes me feel grateful for my struggles. If my pain even changed just one life, then it would be worth it all. It’s not all about me.

It’s easy to get so wrapped up in ourselves and our pity parties, forgetting that there are so many others out there who are in pain. You never know when you will touch a life or change a person’s path, simply by living out your own struggles. I’ve been able to walk alongside others in their own battles because of my own challenges. I’ve been able to offer a listening ear that truly understands pain rather than simply pretending to know. My story has caused others to receive help faster than they would have otherwise, it has informed many more doctors about RSD/CRPS, and it has changed lives in numerous other ways. I’m not saying that it’s all because of me, because it’s not, but these great things are coming out of the darkness of my life. Beauty from ashes.

 Your story has meaning. Your life has purpose. Even if you feel like no good could possibly come out of your pain and struggles, I guarantee that you are touching lives in ways you don’t even know. Because of your story, someone else may be able to find a correct diagnosis. Because of your pain, lives may change. You just never know how your life will impact that of another person, just by choosing to stay alive. By choosing to fight. By choosing to simply be who you are.

Your story matters. Never forget that.

{Credit: Holley Gerth}

A New Kind of Diet

Summer is rapidly approaching and bikini season is beginning. That means that I’ve heard the words “weight,” “fat,” and “diet” at an increasing rate lately, and quite frankly, I’m getting tired of it.

I have friends telling me, “oh, I’m just losing a couple of pounds to get in shape and tone my stomach for when I hop into my swimsuit.” I’ve heard from others about how they’re cutting out certain foods, or even restricting completely. They’re trying to attain that “ideal body” so that they can feel better about themselves when they slip on that yellow polka dot bikini. But you know what? Losing weight, controlling food intake, starving yourself…these things won’t make you happy.

Yesterday I had a conversation with a friend about her high school-aged daughter’s temptations to lose weight. She said that she’s been feeling like she needs to stop eating in order to be accepted. She is a beautiful girl with many talents, but her weight has been at the top of her mind lately, clouding everything else out. And it breaks my heart.

How did we become such a weight-obsessed society? Why are there more articles and websites promoting weight loss than love and respect for our bodies? Why does it have to be this way? It doesn’t. We can stop this trend and turn it around. I dream of the day when I can pick up a magazine in the grocery store and not see any ads for weight loss pills or information on the latest diet trend.

I’ve gone down the diet route. I went so far down that road that I landed myself on a cold, hard bed in the emergency room, wires strapped to my chest, being told that I was on the brink of death. I had starved and worked myself to the point that my body was no longer functioning. I could barely muster out a single word because I didn’t have the energy to make a sound. Only broken whispers brushed past my lips as I answered the slew of questions being thrown at me.

I thought weight loss was my key to happiness. I thought that if I toned up and wiggled my way into a smaller size then I would be more loved and the memories of my past would disappear. I thought that I would be free, happy, and beautiful. Well guess what? None of that happened.

In the end, I learned that with every pound I lost, I also lost a part of who I am. I lost my happiness, my joy, my ability to hold a conversation, my friends, my relationships with my family, my grades, and so much more. I was completely trapped in my own mind, and no matter what other people said, I didn’t feel like it was ever enough.

Now, I’m not saying that every diet leads to anorexia or that we should all just slam down billions of calories a day. I understand that there are medical reasons that would necessitate a reduction in weight. But most of the time, people who start these diets do it because of an inner struggle of identity and self-esteem. They think that cutting out certain foods or spending hours upon hours in the gym will magically cure all their problems. This is where the problem is. This is what needs to change. The idea that weight=worth. That, my friends, is simply not true.

So, before you consider that summer diet or bottle of pills, take a moment to think. Is dropping a couple of numbers on the scale really going to make you feel better? Are you going to wake up and feel like a new person once that swimsuit finally fits? I’m willing to bet that if you can’t accept yourself for who you are now, losing weight will only lead to a reduction in mass, not a decrease in sadness or increase in friends, love, or self-worth.

I think we should start a new kind of diet. One that focuses on the positive aspects of ourselves and silences the lies that says we’re not enough. I suggest we begin to actively embrace our bodies for what and how they are at this very moment. If you’re reading this, that means you’re alive. And if you’re alive, then that means that you have a functioning body that is working hard to make sure you are still able to breathe, read, and live. Why are we so quick to reject this beautiful creation?

Let’s choose to spread love and stop dieting. Let’s decide to live healthily but not in deprivation. Let’s make up our minds to respect our bodies and take care of them like they’re the only ones we’re ever gonna get. Because, well, this is it. As long as you’re on earth, you’re stuck in this body. You might as well learn to love it.

 

 

RSD and ED {NEDAwareness Week}

So here’s something I don’t really talk about much, but since it’s NEDAwareness week, I will chime in a bit of my story…

I am an eating disorder survivor. I could say I’m a victim or in recovery, or even recovered. While those may be true, or may have been true at one point in time, I like the word survivor the best. It indicates that I fought a treacherous battle and came out alive. Even though I could have lost, could have died…I didn’t. I survived.

Having an Eating Disorder and also having RSD is fairly common, at least from what I’ve heard. My disorder developed around the time that my RSD appeared, and spiraled out of control after the diagnosis 8 years ago. The trauma from my whole RSD ordeal, along with other predisposing factors created a chasm of chaos, and before I knew it, I had fallen into a very deep pit.

There are so many stereotypes and misconceptions about eating disorders, so that may be part of the reason I keep quiet about that chapter of my life. But I really think awareness needs to be spread about the truth behind ED’s. Because they’re not all how the media portrays them. Allow me to enlighten you.

5 Common Misconceptions about Eating Disorders:

1) Eating disorders are all about food. No. No. No. False information. While they may manifest themselves in the form of food, there is a much deeper issue going on. People with ED’s use food as a way to control something in their life. For me, my RSD was something that I could not control. I couldn’t control the pain in my body or when it would spread, so I transferred my out-of-control feelings to something that I had a say in: food. But it was never about the food. The food represented all the fears, problems, and things I couldn’t control in my life.

2) Only girls have eating disorders. Again, false-o. Eating disorders do not discriminate-boys, girls, men, women, old, young. It doesn’t matter. ED’s are not just a “rich white girl” problem, as some may have been led to believe. Absolutely not. Everyone has some sort of a struggle in their life, and for some it happens to come out this way.

3) People choose to have eating disorders; they can just stop if they want to. What?! Can you choose to have cancer? How about RSD? Diabetes? Nope. While someone may be performing certain ED behaviors, typically they do not wake up one day and say, “hmm…what am I going to do today? How about I develop Anorexia.” That would be ridiculous. I once was in the hospital for my eating disorder and a nurse there took me into a room and yelled at me, saying that I caused my ED and all my problems, and I was just trying to get attention. She, along with other healthcare professionals, told me that I needed to just “snap out of it” and stop wasting my parents’ money on treatment. Yes, I even had a doctor who took out a calculator, added up how much my treatment was costing per day, and said, “See, you’re wasting xxxxx dollars per day, all because you won’t eat. So just eat and go home so you don’t dry up your parents’ bank account.” EXCUSE ME?! Ridiculous. So no, people don’t just choose them like they choose their outfit for the day, and believe me, if they could magically stop, they would. Oh, so many days I cried out and wished I could just stop. But it’s not that simple.

4) “Once an [anorexic, bulimic, binge-eater…] always an [anorexic, bulimic, binge-eater…] . Wow, so you’re saying that having an Eating Disorder automatically means that you will be chained to it forever? Really? Okay, so the truth of this statement is that there is no cure for eating disorders. True. There isn’t a pill that you can take or a special treatment that is guaranteed to work. But there are ways to break free. Does it take hard work? YEP. Dedication, determination, and a conscious decision to stay on the right path? Sure. But it isn’t a set-in-stone life sentence. I used to have people look at me and say that I’d never get better, I’d always struggle, and I might as well just stay in a treatment center forever because that’s all I’d ever be. “The anorexic girl.” I refused to accept that, because I wanted a life bigger than ED. I worked hard and decided to dedicate my whole being to achieving freedom, and now I am here to say that I no longer consider myself as an individual with an eating disorder. I am free from that. Sure, I have my days when I don’t love what I see in the mirror, or I feel like I am out of control a bit, but I choose to stay away from the old coping mechanisms of the past. So no, once an anorexic, not always an anorexic. The same goes for bulimia, BED, EDNOS, etc.

5) You have to be “tiny” or look a certain way to have an eating disorder. There are plenty of people out there who have been diagnosed with eating disorders, but you wouldn’t be able to pick them out of a crowd. Yes, a common indicator of anorexia is low body weight, but there is more to it than that. There are thin people who are perfectly healthy, and there are average sized people who are in the depths of an eating disorder. There are eating disorders other than anorexia, and you don’t have to be stick-thin, as the media may portray, to have an eating disorder. Eating disorders can be invisible, just like pain. So don’t automatically categorize someone based on their outward appearance.

Those are only a handful of the common things I hear people saying about eating disorders. Please know this: eating disorders are not a joke. They are serious, and they need to be taken seriously. They are not a game and they are something to be mocked.

If you or someone you know has an eating disorder, there are many resources here. And if anyone needs a listening ear from someone who’s been there, you can always talk to me 🙂

Be kind to everyone, because you never know who may be struggling.