Tag Archives: CRPS

If only I had been warned… 


When you first are diagnosed with a chronic illness you are often times overwhelmed by the amount of literature that is designed to “prepare” you for what the rest of yr life will be like. Often times it tells you about the symptoms and treatment options that you should know about. However there are so many things that that the literature couldn’t prepare me for and didn’t warn me about. Here’s just four of the things that I wish I could have been prepared for: 

1. Sleepless nights –> I can’t even begin to count the number of nights that I have gone with little to no sleep throughout the last 7 years. While my friends are missing sleep for the “fun things” people my age typically do, like nights out at the bars or late night dates, I have become an expert at navigating the late nights that I can’t sleep because of pain with the help of Netflix and my Kindle. One negative side of sleepless nights is the fact that no one is awake around you. It’s during these nights that I have the most difficulty accepting my diagnosis because I’m physically secluded from the sleeping world around me. 

2. To love and be loved –> These days we live in a “hook up culture” that makes it difficult for any young person to find a serious relationship. Add in the diagnosis of a chronic illness and the prospects of love seem to decrease even more.i have not been in a relationship since the time I was diagnosed 7 years ago. A large reason for that is my own personal hesitations and I’m willing to admit that it is hard to think about starting a relationship with someone when there are some days that it is difficult to just take care of myself, let alone nurture a budding romance. Also, there’s the whole “invisible” side of my illness. On the outside I look like such a normal person and it’s so confusing to try to explain to someone that while it may not look like it, I’m very ill. There’s the problem of when do you address your illness that goes hand and hand with the invisible nature of everything too because telling someone on the first date that you have a whole file cabinet full of medical issues isn’t exactly sexy but then if you wait to long to tell someone they can feel as if they had been mislead. Finally, there is the fact that I can’t imagine putting another person I love through the stresses of my disorder. Between the visits to doctors, surgeries, flare ups, and the uncertainty of the day to day, I’m quite the handful (and that’s even before you account for my sass).  While I know that my “Prince Charming” is out there, some days it is hard to imagine someone entering this battle with me.

3. The fear of pushing myself in my academics and my career –> I was first injured and received my diagnosis while I was high school. At that point in time I had already decided that I was ment to do something with my life that changed the life of others around me. By some miracle I was able to graduate high school with a nearly perfect GPA and I was accepted into a highly accredited research university. Due to my disorder I was unable to have a “typical” college career and at one point I was even forced to make the decision to take a year off of classes in order to have surgery and to receive treatment. I may have not have taken the most common route but I am happy to say I was able to graduate with honors with not just one degree but two.what scares me the most now is the fact that in a few weeks I’ll be starting my first real job. While in college I was able to not only manage my pain fairly well but I was also able to hide it. Due to doctors appointments, I will not be able to do that in my job. Also, I’m supposed to be applying for Ph.D. Programs this year because I want to continue on with my education but then I fear that I will be forced to move away from my doctors and my family which is terrifying because I’m not sure how to cope without them. For all these reasons I fear to strive for great things because if I set my bar low, then I can stay at home and not let myself and those around me down.

4. The awkwardness –> one thing I could never be prepared for is the way that people started to interact with me and in return the way I began to interact with them. When people learn that you have a chronic illness, suddenly, you change in their eyes. They often try to do things for you that they think are helpful, even when you don’t need anything done at all. You are also flooded with the awkward questions and statements that I have no idea how to respond to like “are you doing better?” Or “I wish I knew how to make this better for you” and the always awful “I’m sorry you have to go through this”. I understand that people say these things because they don’t know what else to say but after seven years of these statements, I have become truly awkward around people because I won’t lie sometimes it’s easier just to avoid people so that you don’t have to fave the awkwardness. 


Double Agent


Sometimes living a life with chronic pain can feel like you’re living life as a double agent.  On the outside I look like a normal, healthy, and content woman that is ready to tackle any obstacle thrown my way. On the inside, however, I struggle daily with being tired, irritated, unconfident, and in pain. When you develop a lifelong illness when you’re in your teens, you pick up many things quickly. You learn to hide what you’re thinking, but mostly, you learn to hide what you’re feeling. 

One thing that I have always tried my best to do, is not let my disability become my label. In fact, it took me several years before I would even admit that I was disabled. I have always done everything possible to hide the truth from onlookers and from what I can tell, I have done a pretty good job.  The problem though, is sometimes I do such a good job hiding what is happening, even the people that know me best and understand my condition aren’t able to tell how I’m really feeling. One prime example of this happens with my friend group (we call ourselves the fab five). The fab five consists of five of us sisters that met after pledging our sorority and we instantly all connected. We enjoy everything your average college aged women would enjoy: eating way too much queso,staying up late talking, laughing uncontrollably, drinking margaritas, and going out on the weekends. These women became my rocks during my last two years of college but there is one thing that is difficult; they didn’t meet me at one of the low points of my life (one of those times when my pain was at its highest). The thing is that I know these women would support me through anything. They would be there if I had another batch of surgeries, they would be there if I hadn’t slept for days, and they would be there if I needed to just yell and cry about how unfair it is sometimes that I must live with the illness for the rest of my life. The problem is though, I don’t want them to ever see that side of me. Now of course they know that I have CRPS and yes they know that sometimes it limits what I can do, but even on the worst pain days, I never let them see how much it hurts. 

Then there’s the ways I hide my pain from my family. I have a great family that has been exceptionally supportive and has faught for me every step of the way through my treatments but sometimes, that’s what makes it hard to let them know I’m in pain. I have seen the toll it has taken on my parents, knowing that they have a daughter that is in pain and there is nothing they can do to make it better. I have watched my mom (a nurse) cry over the fact that there is nothing she could do or give me that would help my pain. I have watched my dad (an electrical engineer) struggle with the fact that there is no invention and no amount of work that he can produce that will make it all go away. Sometimes, when you’re in pain everyday and there’s nothing you can do to fix it, it’s easiest to just hide your pain from your loved ones so at least you’re doing something to reduce the psychological pain they are suffering.  

It is through all of this, the hiding of my real feelings, that I am forced to become a double agent. Most people think of double agents as traitors, but there is one thing I have learned since my diagnosis: double agents are not traitors.  They are protectors and lovers because they are doing everything in their power to keep the bad and the ugly away from those they care about, even if it is at their own cost.