Writer presents reality of measurement of pain

Ten days before my tenth birthday, I was diagnosed with “the suicide disease.”  

“Imagine going through your daily life where everything that you touch, or that touches you, where most every noise around you from a passing car or plane to children playing, causes you pain,” CRPS victim and founder of American RSDHope Keith Orsini said in description of the disease. Complex Regional Pain Syndrome, CRPS for short, sits at the very top of the McGill Pain Index. Arthritis is rated as less than half as painful, phantom limb pain as around three quarters, and unmedicated amputation a couple of points below. “The suicide disease” has, therefore, become a more common name for the disorder. Those with the disease are referred to as victims, as most will die from the disease – accurate and reliable statistics are impossible to find, but suicide is proven as the most common form of death for these patients. Join grieving family and friends in November for observation of CRPS awareness month. 

About the disease

Traumatic injuries such as soft tissue damage or botched invasive surgery are the root of the problem. A select few gravely unfortunate souls are unable to forget the feeling and develop PTSD symptoms stretching far beyond the mind. Rather than mere flashbacks and insomnia, the infected area will waste away with nearly untreatable persistency, all thanks to faulty brain signals and in no part resulting from actual remaining physical damage, ultimately leaving the body with final damage similar to that of polio. Mind over matter sickeningly proves itself real. Fire is the main descriptive word used as an attempt to summarize the pain – pure fire. Burning alive.

Fewer than 200,000 victims worldwide, or about 0.0003% of the population, suffers from CRPS, making diagnosis a trying journey and often an unattainably lofty goal. Few doctors recognize the name, much less presence, leaving most patients long beyond the curable Stage 1 by the time they can find anyone who will not say it is simply in their head. Lack of treatment leaves over 70% of cases to spread and infect new portions of the victims body. Due to incurability, some patients will suffer all the way to Stage 4 – where amputation is a common practice – instead of ever again living a normal, happy life.

My story

I spent almost a year in a wheelchair or crutches waiting for a diagnosis. Countless doctors told me it was all in my head, as MRIs, X-rays and all other forms of scanning known to man showed an utter lack of injury. Medical professional after medical professional stated that nothing was wrong, that I was lying, that I wanted attention. Those who did believe me, of which there were few, said, “at least it’s not cancer.” At last, we learned it certainly was not cancer.

Oh, how I dream it had been.

Ten days before my 10th birthday, a doctor told my parents it would likely be my last. He warned me never to search the internet for the forbidden words – Complex Regional Pain Syndrome – for fear I would lose the will to live before reaching a two-digit age. Ignorance is bliss, so I was told. Be a child. Go play. Be strong, my dear, or you will waste away. You will never recover. You will die. Forget this ever happened to you. Do everything in your power to be normal again, and never look back. Do not let the flames engulf you. For to be normal again proves a Herculean task, but you are strong, little girl. You are one of the few who have survived.

But, I do not want to forget. Cancer is not as painful. Cancer is not as deadly. It is my job to bring awareness to this world, to leave no child left behind again. Victims may forever lose their childhood to the fire, but that does not mean those burned memories should be full of  “at least it’s not cancer.” Those who state this are correct. It is not cancer. But, we are just as strong as cancer survivors. We are certainly as justified to tell our story and ask for understanding. We are warriors. In a world focused more on cancer, with schools and businesses having cancer-awareness weeks and supporting cancer foundations and having assemblies to honor those lost to cancer, we are always overlooked. Not once have I heard anyone wanting to help us. Cancer has a cure, unlike CRPS. It does not mean cancer is any less important, but it means we should be treated as equals – we the warriors are here, too.

What you can do

Unless you are the most brilliant mind of the century, there aren’t immense changes you can make. But, you can make little changes, and together, little changes make the biggest differences. Next time you or someone you know is donating funds to charity, consider a nonprofit CRPS foundation such as RSDSA.  Avoid phrases such as “at least it isn’t cancer,” as cancer may not be the worst thing out there. In fact, try not to compare medical conditions you know little about. If you are an artist, create art this month that shares with the world the knowledge of the suicide disease. Business owners, if you are planning to have a cancer awareness program or event, perhaps alter the theme to be CRPS or another disease that needs more help than cancer.  No matter who you are, you can help us somehow. Save the children like me.

Don’t forget us just because it isn’t cancer.