CRPS/RSD is called an “invisible disease” because the signs and symptoms are often just a pain that lasts longer than the initial injury and is more intense and continuous. It makes for a unique situation that places a burden of proof on the patient and often doctors or others who have not heard about CRPS/RSD tell the patient that what they are feeling is entirely in their head.
Some people with CRPS are denied help and care because of the ignorance of these people and it places them in a lonely, isolated place where suicide seems like the only escape from the constant pain. In fact, RSD/CRPS has the highest suicide rate of any known disease.
There are an infinite number of doctors who have no idea what CRPS/RSD is at all. It amazes me that a disease that has been around since before the civil war; I think that the first case was actually documented sometime in the 17th century, is virtually unknown.
One of the reasons that those of us with CRPS/RSD are treated like we are crazy is because of the lack of education placed upon chronic pain disease by medical schools. I read that medical students approximately spend 17 hours of their class time devoted to pain and frankly, that is not enough. Nurses receive even less education on pain. Until pain is addressed properly and extensively by those teaching our future doctors and nurses then we will continue to hear that they have never heard of our disease or the infamous “it is all in your head.”
The need for awareness I believe is very vital to educate those around us to talk about our disease. The time for being complacent is over. We each have a responsibility to each other to promote the cause, symptoms and treatments that CRPS/RSD or any chronic pain disease requires. Even with this blog I’m raising awareness about what living with CRPS/RSD is like.
Research is a top priority. Chronic pain diseases receive very little research funding compared to Heart Disease, Cancer and Diabetes. RSDSA and smaller support organizations attempt to raise funds for research by holding tag sales, walk/roll-a-thons, bake sales, auctions and merchandise sales; a drop in the bucket. We can promote fundraising through the organizations that we belong to and the people we know. We can ask that money used to buy Christmas or birthday presents be donated towards research. We are restricted only by our lack of imagination.