“Your illness does not define you. Your strength and courage does.” – unknown
Imagine a pain worse than child birth. A pain that’s even more horrendous than an amputated finger or toe. You have the highest level of pain that exists today and experience it everyday for the rest of your life. No cure and no way to stop it. It never occurs to you that one day you’d wake up sick and never get better, but it happened to you. As said by Elizabeth Taylor “The only way to get through the day is to force yourself to get up. Force yourself to put one foot in front of the other, and refuse to let it get to you. You fight. You cry. You curse. Then you go on about your business of living.”
Imagine that the blood in your entire body was replaced with gasoline, lit on fire, then kept that way 24 hours a day 7 days a week. All whilst knowing nothing could be done to put this fire out. Then imagine all your skin was burned off and is now completely raw; next massage salt into the wound with a strip of sandpaper. A complete physical, mental and emotional assault on your body.
Imagine going through just one day where everything you touch or everything that touches you causes instant, agonising pain. Anything from your clothing, a gentle touch from a loved one or even a stray hair falling onto the bare skin of your leg causes you pain. Each sound is a scream in your ears. A school bell, a passing car or even a loud wind. A pain that demands to be felt.
Imagine getting through the day is like walking in a circle. Except for you, you constantly walk these circles in a deep swimming pool. Each step requires more effort than everyone else, making it impossible to keep up with everyone out of the water. You just become more and more fatigued the harder you try to catch up. So you have to tell yourself, “it’s okay if all I did today was breathe.”
Imagine a pain that messes with your brain function. A pain that fills your head with a thick fog making it almost impossible to think. Turning everyday tasks such as driving or even holding a conversation into giant hurdles you barely scrape over. Combined with the lack of sleep, constant agonising pain, stress, fear and loneliness, you find it near impossible to concentrate on anything.
Imagine leaving your school dance in an ambulance and having absolutely no idea how you got there. Fear, depression, anxiety and pain all compacted into one ball orbiting your brain. You’re strapped on a stretcher, screaming and cursing while every speed bump and pothole sends agonising flames through you, taking over your entire body. That’s when you realise. Your pain has spread. You start screaming louder and louder to the point your vision goes blurry. “I can’t feel my arm!” you wail to your mother only to find the paramedic is ripping out chunks of hair from your arm, feeling none of it. At the young age of 14 you are certain you are going to die.
Imagine being terrified of going to the hospital. You are just desperate for relief but because of the uncertainty, you are fearful. You have no idea which doctor you will get or if they will have any understanding of your pain. They may not know that CRPS (Chronic Regional Pain Syndrome) is a chronic neuro-inflammatory disorder where the nervous system malfunctions in response to trauma. The nerves misfire sending constant pain signals to the brain. They might not even try to help you, just send you home helpless with no solution. You should not have to be scared of the only place you can turn to for help but when medical professionals make you out to be the problem instead of the real issue – the lack of research, when they blame you for something you have absolutely no control over, sometimes you just can’t help it.
Imagine you are in the most amount of pain you have ever encountered and all your closest friends accuse you of faking it to get out of a test in class. Everyone has labelled you as being overdramatic and a complainer just for having a condition so rare it’s misunderstood. To them you are just a warning sign. Someone they look down upon and have to look after. You are treated as a lesser person by your friends just because you can’t walk as far as everyone else. Having to take the odd pain killer here makes you a criminal and no matter what you do, there’s nothing you can do to change their minds.
Imagine being scared to let people know how much pain you really go through, especially your close friends and loved ones. You never want to let them to really understand how much you suffer because you know how much they would then suffer as well. So you fake it. Put on a smile and you say “I am fine. Its nothing I can’t handle.” Which is just as much a lie to them as it is to yourself. You get so used to putting this wall up, when the time comes and you need to convey to your doctor your depth of pain you just can’t. It becomes so difficult to truly let your guard down and to take away those walls out of fear of not being able to put them back up again.
Imagine feeling strong. You’ve been to hell and back and now you can take on the world. You don’t know pain until you’re staring at yourself in the mirror with tears flooding down your face, begging yourself just to hold on and be strong. Just making it through days like those make you feel like a champion. You showed courage. No one appreciates you or even notices how strong you are for holding on. But you do. You make yourself proud and that’s all that matters.
People always say “With pain comes strength” and I can honestly say I never knew how strong I could be until I encountered Chronic Regional Pain Syndrome. Whenever I need motivation I look back on the past 4 years of my life, living with CRPS and I know I can get through anything if I put my mind to it. I don’t want my pain and struggle to make me a victim. I want my battle to make me someone else’s hero.