What a Day With Complex Regional Pain Syndrome Feels Like

Can a person imagine something they have never seen or experienced? Does imagination have limitations? No matter how hard I try to explain the sound of the crashing waves, the feeling of the sand in my toes, and the beautiful horizon, to someone who has never seen a beach, they will never understand what it is like to be at a beach until they experience it themselves.

When I first got diagnosed with complex regional pain syndrome (CRPS), I thought the biggest struggle would be dealing with the pain. Almost eight years later, I realized that I was very wrong. One of the hardest things to deal with is the fact that no one can see or understand what I’m going through. It is hard to understand what it means to have non-stop pain unless you live with it. On my better days, it’s even hard for me to remember what my worse days feel like, so how can anyone else understand what I’m going through if I can’t unless I am experiencing it at the moment? If I look like a completely normal goofy teenager what else can I expect from people to see? There is no good answer, there is nothing we can do to change the fact that millions of people have invisible diseases, but I will try my best to raise an awareness and understanding of chronic pain.

When I wake up in the morning there is a split second when I don’t feel pain. When I forget about my pain. And then I open my eyes and it hits me. The pain, the realization that I will have to go through another day with this pain, and knowing that I will have to smile and fake that I am fine to my peers, because the only thing that can come out of my trying to communicate the pain is me being labeled as a complainer.

Teen girl sitting on outdoor, stone stairs.

Despite the fact that I am exhausted because the pain makes it almost impossible to sleep, trying to be a normal person all day with constant pain is an extremely draining task. Imagine going through the day is like walking in a circle normally, but for you to get through the day, you have to walk that circle in a swimming pool. Every step you take takes a lot more effort because you are pushing though the water which is much denser than air. It will be almost impossible to keep up with everyone out of the pool and you will quickly become fatigued. Additionally, the pain will mess with your brain function and make it almost impossible to concentrate on anything. Even with putting aside the effects that lack of sleep have on cognition, imagine trying to concentrate on anything while in terrible, constant pain. It is practically impossible.

Now imagine something you just can’t shake. Maybe it’s something positive; you have a friend who you love but is a bit clingy and you need space. No matter what you do or where you go they are there. At a certain point, you are just tired and done and want them to go away. You just desperately need a break, some time to yourself. But no matter what you do you can’t get that. Chronic pain is that constant thing. Forget about the fact that pain is obviously painful, but imagine just being so overwhelmed and in desperately need of a break from something but no matter what, being unable to get rid of it. You would probably be mad, frustrated, upset, and hopeless.

My point in writing this was not to make you feel bad for people with chronic pain, but when you in constant pain, it is nice to feel that people understand. While I know I will never make anyone really get it unless they’ve experienced it, I hope this can spread some awareness and understanding of what it feels like to live with chronic pain.

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