I felt like I had a chance of a normal childhood, getting to explore new things, hang out with friends, and be a kid. One day, after playing and being silly with my brother, a simple game turned into a quick reminder as to how unstable CRPS can be. I ended up in the hospital for another ‘pain holiday’, as I had worsened. This time, it was much more than just my foot as the pain and intensity of symptoms were spreading. I remember this stay was slightly harder on me after realizing how fragile I was. Doctors were telling me to give up any kind of activity or sport that involved contact with others, competitiveness, and high impact where I could injure myself. It was a real-life bubble, and I had to be careful about every little thing to lower the risk of CRPS spreading to other parts of my body. I remember for Halloween one year dressing up as a “accident waiting to happen”, because that was what I was. I had all the pieces, from crutches and ace bandages to walking boots and braces. A 9-year-old shouldn’t have to worry about these things, but a little humor always helped. It ended up being an enjoyable Halloween.

All of this was a tough pill to swallow, though. I spent my extra time in doctor offices and therapy sessions, but I still wanted to have fun and be carefree. I started trying out new hobbies as I began to feel better. I joined painting and drawing classes, I started diving lessons and eventually fell in love with volleyball. That became my new outlet, and I started getting good at it. I had to accept the fact that anything could cause a flare or spreading, but I had to pick and choose what I also loved doing. Thankfully, volleyball wasn’t too hard on my body or my leg itself, and I was happy in those moments. It looked as though my preteen and teen years were going to be great and I was able to jump into living again.

I truthfully didn’t know how impactful all of this was on little me and it has occupied my mind and body for decades. Before I continue, I think it’s important for me to describe the other side of chronic pain: psychological suffering.

Being open about what I was going through was so hard. I was still so young, and kids at that age can be so cruel. Most people didn’t understand what CRPS even was or how much pain I was in because I usually looked great on the outside. I felt isolated and different, like I had to hide parts of myself that I didn’t even want to have. Invisible illnesses are challenging to dissect. On the outside, I look well; I could walk, I would smile, I went to school, but on the inside, my body was constantly fighting itself. The world can’t see your pain or suffering, so it often doesn’t believe it exists. Around that time, I was trying to discover who I was heading into my preteen/teen years, but I had already lived so much “life”. I was forced to grow up incredibly fast and I didn’t get to experience what my classmates were experiencing. I have had several incredibly traumatic experiences, but I learned to internalize it. I never spoke about it, some people didn’t even know I was ill (and I am sure some don’t still to this day). The best way for me to cope was to be strong and act like everything was normal. I have lived my life this way ever since, and I have come to learn that that choice has been detrimental to myself as an adult. Be silent, be strong, be accommodating. Don’t make others uncomfortable and don’t ask for sympathy. Don’t complain, don’t inconvenience anyone. This was my unspoken motto. I didn’t want to come across dramatic and unpleasant (which is actually insane for anyone struggling with anything difficult to think). I have learned to cope and survive this way my entire life, but I am trying to change that and learn that I am not a burden and speaking about it and sharing my feelings does not make me weak.

For a few years after my second pain holiday, I was lucky. My pain was being managed, and I could live life day to day without constantly thinking about it. I played volleyball, did well in school, hung out with friends, and, for a while, things felt normal again. In high school, everything changed after a severe volleyball injury, one that would unravel everything I had worked so hard for. That moment didn’t just bring my CRPS out of remission, it reignited a chain reaction of affliction that would shape the rest of my life.

My CRPS journey has had to be in multiple parts, and in my next post, I want share how my CRPS spread, the hundreds of treatments and procedures I endured, and how my genetic disposition ultimately altered the course of my adulthood, in both devastating and eye-opening ways.

Thanks for reading.