Silence is the Burden

CRPS 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 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.

 In the beginning of my pain journey I met my share of doctors who did not believe that I was in pain.  I had one doctor that forbid me to visit the ER because he said that I would be wasting the time of the doctors and nurses and taking away valuable time that might be needed by a “real” patient.  I met one doctor who said that I could not possibly be in pain because I smiled and laughed at the therapists.  People with crps become good at masking the way we feel.  We try to put a brave face on things and not show how we really feel.  I don’t know that if I had not masked the way I felt by plastering a smile on my face that the doctor would have taken me seriously or not.

There are an infinite number of doctors who have no idea what rsd/crps 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 17^th century, is virtually unknown.  Each time I have been in the hospital I have encountered nurses who have no idea what I am talking about.  I try to keep a wallet card with me that explains what rsd/crps is and the best way to help me.  I have found that this helps somewhat although I have to tell each shift that a copy of the card is in my chart.  (Copies of this card may be purchased from RSDSA at www.rsdsa.org)

I believe that one of the reasons that those of us with rsd/crps are treated like we are crazy is because of the lack of education placed upon chronic pain disease by medical schools.  I was told by a friend who is a medical student that approximately 17 hours of their class time is 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 second reason is awareness.  I believe it is every person’s obligation to educate those around him/her 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 rsd/crps or any chronic pain disease requires.  I try to take every opportunity to talk about rsd/crps whether it is to the EMT’s who respond when I need to go to the ER or the nurses who treat me in the hospital.  I have talked to Sunday school classes, church congregations, school assemblies and even this blog is an attempt to raise awareness about what living with rsd/crps is like.

The last reason is research.  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.   I know it is hard to contribute money when you are living on disability or workman’s comp but, we can promote fundraising through the organizations that we belong to and the people we know.  We can ask that monies used to buy Christmas or birthday presents be donated towards research and we can ask that memorial funds be set up at local funereal homes.  We are restricted only by our lack of imagination.

There is hope that this climate towards the chronic pain patient is changing.  The US Senate Full Committee on Health Education Labor & Pensions is currently holding hearings on “Pain in America: Exploring Challenges to Relief”;

http://www.help.senate.gov/hearings/hearing/?id=5906d585-5056-9502-5dd1-1d549d0d88f7&utm_source=Feb.22&utm_campaign=Feb22&utm_medium=email .

This committee is exploring the barriers to treatment and research that currently exist for chronic pain in the United States.

The latest statistic; provided by this Senate Committee, state that there are over 116 million adults in the United States that suffer from some type of chronic pain disease; more than Heart Disease, Diabetes and Cancer combined.  I hope and pray that this committee can lead the way to changing the way that chronic pain patients are treated and the dollars that are spent on research.  We all need to become more aware of what is happening and help those who already fighting to end the burden of silence that we all bear.