MISDIAGNOSED: The Pain of Denial
Something my brother and tens of thousands afflicted with CRPS / RSD have and will experience is the denial or misdiagnosis of their pain by medical professionals. You know the story, you keep going back to your Doctor looking for answers to your pain only to be told, “It’s all in your head”. Meanwhile, the pain gets worse presenting many other serious physical / life issues. Well not only do I think that this is sad and unfortunate but considering the level of pain associated with CRPS / RSD, the complications of no treatment, as well as, the resulting loss of movement, career, sleep and sanity etc. can only be labeled as abusive.
So why is CRPS / RSD misdiagnosed or denied? Some think the reason is because it is so poorly understood. Different patients present with different symptoms and respond to different treatments. Some think it’s because there are so many people seeking narcotics for reasons other than pain that Doctors are ambivalant to prescribe treatment for something they cannot “see”. It could be because many in the medical community, even today, know nothing about CRPS / RSD. As well, in some cases the denial could even stem from a Doctor who doesn’t want to admit the surgery he performed could have started the CRPS / RSD nightmare. Whatever the case, with pain being a leading cause for suicide, one can only wonder if it is the actual pain levels and consequent life struggles that caused people to make such a horrible decision to take their own life or rather being told over and over again, “It’s all in your head”.
Cynthia Toussaint is a pain warrior you may recognize as a longstanding advocates for CRPS / RSD. I first was introduced to Ms. Toussaint while watching the television series “Mystery Diagnosis”. She has suffered not only with CRPS / RSD for over 20 years but for at least the first decade experienced terrible denial of her pain by the medical professionals who “treated” her.
Cynthia Toussaint now champions women in pain through her For Grace website. If you go to the website you will see several recent news reports regarding the misdiagnosis and denial of pain and CRPS / RSD. I couldn’t seem to embed one but here is an example from 2009:
As well those at For Grace hold annual pain conferences. Although geared towards women the hope is still there that everyone experiencing pain, especially CRPS / RSD patients will hear, ” I acknowledge your pain” , instead of, “It’s all in your head”.