Written by Tatiana for the RSDSA blog.
Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope.
When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands draped on my waist, as I twirled around to music over and over was beyond exciting to me. I yearned for it. I lusted for it. Something I didn’t know when I was five years old was that the daydream would have ended sooner, rather than later. I did not know that by the time I’d turn sixteen, I’d already be living with a chronic illness.
Something that almost everybody knows about growing up is that it’s hard. Sometimes, it may even seem impossible. You may even feel like you just can’t do it. Between juggling school, and just everyday life, it can be hectic and stressful. Just imagine what it’s like to go through your day with pain so horrible, you’d wish to saw off one of your limbs, in hopes of finding some sort of relief. Imagine what it must feel like to have various parts of you set on fire, but realize that this fire cannot burn out, no matter how much water thrown on it, no matter how much ice you throw into the mixture. So, you want to fight fire with fire, and throw in some heat? I’m sorry to tell you this, but that’s not necessarily going to help you either. Reflex Sympathetic Dystrophy, now known as Chronic [Complex] Regional Pain Syndrome, is an autoimmune disease that attacks the sympathetic nervous system. It causes the brain to constantly send pain signals to different parts of the body, but the pain that it causes is not as simple as a muscle ache or a simple sprain. Reflex Sympathetic Dystrophy causes a burning pain that can be brought to a point in which one cannot take it anymore. Many people with RSD/CRPS turn to suicide as their only option, leading RSD/CRPS to also have earned the nickname of “The Suicide Disease.” Unfortunately, although I am just a child, and I am trying to grow up, although I am trying to make something of my life and finish school to move onto college, and [find] my place in the real world, I also have the burden of RSD/CRPS to carry with me.
I started to experience my pain six years ago, when I slowly lost my ability to even just walk. I had previously sprained both of my ankles, and had finally recovered. Or at least I thought. At just ten years old, I was able to say that I could watch all of my friends running around in the school yard, but I couldn’t run after them. It hurt me to a point in which the pain resembled walking on shards of glass. As a clumsy child, I, unfortunately, had the joys of knowing what that felt like. And with that I spent an hour in the podiatrist’s office, being told that it was simply a case of plantar fascitis, and that I simply needed orthotics. And so, it was orthotics that I received. I didn’t know that these would not solve my problem, though. I was unaware that my pain would come and go as it pleased, and leave me practically crippled, from time to time.
On my fourteenth birthday, I had the joy of returning to the podiatrist, after being unable to walk again. This time, I was told that I had tendinitis, and a bruised bone. I was given a note that stated for no gym until further notice and an array of braces to wear on my ankles. At that point in time, friends of mine began to question me. They’d ask me questions that not even I could answer at that point. “Tatiana, what is wrong with you?” “Dude, you’ve been out of gym for eight months, when are you coming back?” etc. For a fourteen year old, being out of gym for more than eight weeks alone was a huge deal. And when teachers started to question me and my walking boot, that I was in to prevent pressure from being put on my foot, I had no clue what to say. But as before, my pain went away for a while.
September of 2015 came around, and I was in Florida with my family, trying to have fun, and enjoy myself in the various theme parks. I’ll never forget the night that we were simply walking through Epcot, and it was as if someone had literally torched my foot. I brushed it off, thinking it was just muscle soreness, from walking around way too much, without sitting. Everyone around me was having fun, and enjoying themselves. I didn’t want to ruin the trip. So, I kept my mouth shut until the end, when all of the walking, moving, and various rides jerking my body back and forth finally took a toll on me. Throughout our plane ride home, the turbulence brought me enough pain to make me want to crawl under a rock and never leave that sanctuary that that rock would’ve brought me. For days following our return, I stayed in bed and cried. I was in so much pain and discomfort- there was nothing that I did that would alleviate it. Another trip to the podiatrist, more false hope, and more joy stripped from my already stressful life. I was missing so much from my sophomore year of high school. I was missing out on everything my friends were doing, and the places they were going. I was at a point where I could barely even do the work I was given from my teachers. I was confined to my bed, living a painful life, full of depression and tears. Every single time that I attempted to leave my house to do something, the pain crept up on my shoulder, as if it were a ghost that was dying to tease me to no end, despite the fact that I could never catch it no matter how hard I tried. My pain to me was what a little black cloud was to a depressed person. It followed me around to no end. Toying with my emotions, making me hate myself more and more, with the less and less that I was able to do.
After missing twenty three days of school, and being out of gym for two and a half years, nobody believed me anymore. My friends began to doubt me, my family, even my own mother doubted me. Though my doctor always told me that she believed me, I started to doubt myself. I started to think that this pain was just a figment of my imagination. Something that my brain decided to make up because it had nothing better to do with itself. And that, that dragged me down into this depression that I was unsure I’d ever survive. I built up my walls and locked everyone out, including those closest to me. I no longer wanted to know anybody. I’d look in the mirror and see this broken, tattered body, looking back at me. And when I’d go to turn away, I’d whisper to the soul trapped behind the shards of glass, “You are such a liar.” I was breaking my own heart and I didn’t know if I could save myself.
In April of 2016, I could no longer move from the waist up. My ankles, believe me, they were just shot… I couldn’t bend down to grab a pen that fell from my bag, I couldn’t walk up two stairs, I couldn’t even sit up to do simple tasks such as drinking a tiny bit of water. I felt the weight of the world on my shoulders. I was falling behind in school and in life. Yes, I was surviving life, but was I really living it? Not at all! I’d drag myself from my bed every single morning, and force myself to get up, to go to school, where I’d suffer for 8 hours, only to come home and cry myself to sleep. Everywhere I went, I received pitiful glances and sad stares from people who knew me and the happy person that I once was. I begged the neurologist for answers. For a solution. For anything other than pity. And finally, after 11 MRIs, 8 X-Rays, and 3 C-T Scans, I was confronted with the fact that I have Complex Regional Pain Syndrome. By then, after much research, and suggestions from doctors, I had known what CRPS/RSD was. And I knew that it was one of the most painful conditions out there. At the end of the day though, the real question was, could I actually live with this?
I am almost seventeen now, and life is hard. Life is very hard. I have to work ten times harder to complete simple tasks than most people do. Getting myself dressed is an accomplishment alone. Occasionally, when I do have an endless amount of bad days, I do fall behind in school, and it is as if I am drowning in school work and the fact that I feel the need to impress my family. I think one of the most complicated things for me, though, is trying to keep up with my friends and people my age. Sometimes, I feel like an eighty year old woman, trapped in the body of a seventeen year old girl. Yes, I have friends. Yes, they have lives. They go out, they have fun. But I don’t always want to go out. I always want to have fun, but from time to time the pain becomes unbearable, to a point in which I cannot even go to school. Of course, people question me or accuse me of being lazy, but I know for a fact that I am not that at all.
Another huge problem about being seventeen and having CRPS/RSD is painkillers. I, like most patients with my illness, depend on painkillers to live a somewhat decent life. But, with the opioid epidemic, and me being just a teenager, people often accuse me of being a drug addict or a drug dealer. My question for the people who jump to conclusions would be, just who wants to take more than fifty pills per week? I take eight pills every single day, just to live a sufficient life. That’s fifty four pills per week. Do people actually find enjoyment from that? Because I don’t. I never could. Something that people don’t realize is that aside from naltrexone, I don’t take anything crazy. I take Lyrica, and if needed, gabapentin. It’s not like I’m popping oxy every hour on the hour. This is really a huge misconception, that I honestly hope is cleared up soon.
Despite all these struggles with people and their opinions, a topic that most teenage CRPS/RSD patients will not touch on is the struggle with themselves. Despite my hope, despite my dreams, my mind is a battlefield and I am constantly at war with myself. Being seventeen and struggling with such a chronic illness leads me to have such hateful thoughts towards myself. My mind is constantly pondering why I still have to be here, if I’m only going to suffer. The second I have a flare, I freak out, and wonder if I will ever find a lover who will care about me, despite my disease, despite the fact that it leaves me paralyzed with pain, and often, in tears. This is the part where my CRPS/RSD would want me to tell you that after this, I am giving up. That I refuse to go on. This is the part where it wants me to tell you that this is the end, that I cannot win this fight. However, I am not going to give that obnoxious ghost what it wants. I am the author of this story, and I refuse to lose this fight. I have been in therapy, working on my emotions affiliated with my illness for several months now. Finally, I have learned to love myself. I have learned to ignore what people have to say. I have learned to never give in, and to never give up. The second you allow it to win, is the second that you lose yourself. Although it might be hard, although this body may be cursed with such a painful disorder, I have decided to throw away that little dark cloud, and see the light again.
At the end of the day, no matter what happens, no matter how bad you feel, or how horrific your pain is, all that matters is you. All that matters is you and the fact that you can win this fight, no matter how hard it seems. Your pain tomorrow will not be as bad as the pain that you have felt today. Your life is not going to be horrible forever. Your initials are not RSD or CRPS. And all of us fighting this horrid disease, no matter how young or old, need to know that life does not end with RSD. This is only the start of my journey, and I am terrified for what is to come, but I am ready, and I am stronger than ever. Life starts now.
If you are feeling like harming yourself, feeling suicidal, or know someone that is feeling that way, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or visit their website