One thing I noticed when I became sick with complex regional pain syndrome (CRPS) was that those around me stopped hearing me. My voice got lost. My doctors, nurses, spouse, in-laws, and family stopped regarding my opinion.
Which treatment option I wanted? Decided for me. Which specific symptoms I was having? Checked off on the sheet to fit the latest diagnosis. What I was going to eat? Taken care of. Driving? Not going to happen. When I wanted to go see friends? Not an option.
Whether I had a definite diagnosis of CRPS or not I found that my voice was no longer heard. I was dropping objects, could no longer use my right hand, could no longer walk unassisted, and many days was not able to get out of bed from the intense pain. CRPS was taking control of my body. The frustration from that fact alone was overwhelming. My voice, my opinion was the only resemblance of control that I had left.
I was the one who was agonizing in pain, losing days of my life to my sickness, and having to endure the endless treatment option decided upon. My voice should not have be lost due to the fact that I was sick. Because I was exhausted, in pain, and not articulate does not mean I am no longer capable of making decisions.
My voice can not be lost. Patients need a voice. They should be allowed to make decisions on what they want to eat or which activities to do for the day. Those close to patients need to realize that because they are sick does not mean they are incapable. Doctors should present all treatment options available and allow a patient to decide. Patients know their body best and have to endure the treatment.
My voice, a patient’s voice, is sometimes all I have. It needs to be heard.