By Katelyn O’Leary
In her negotiation textbook Women Don’t Ask Linda Babcock outlines how women are too nervous or afraid to negotiate or ask for a raise or anything in their jobs – due to societal pressures. Females feel guilty or ashamed – whereas men are far less likely to feel that way. The same is true not only in the professional business world, but in medicine as well. Many patients feel a sense of guilt for asking a doctor for help, for more medications, and for questioning their treatment plans. But for CRPS patients, it is extremely important we speak up when the pain is not being treated properly.
Patient advocacy is one of the most important aspects of healthcare, and often one of the most ignored. For patients without friends or family to speak for them, the added stress of dealing with doctors can worsen conditions. Unfortunately for me, I have had to advocate for myself constantly. When I feel ill and I’m in agony, the last thing I want to deal with is paperwork or people. But over the past year I’ve learned that being organized and informed makes the pain bearable. I always try to learn the names of every doctor or nurse who enters my hospital room, and if a treatment is not working I demand a conference with the attending physician and nurses to figure out a new plan.
Patient Advocacy for hire has slowly become a necessary (and pricy) expense for many people. According to the The Providence Journal the Alliance of Professional Health Advocates ranges from 250-300 people in the United States. These hired advocates attend doctor appointments, set up appointments, review medical bills, and ask doctors the hard-hitting questions sick patients are too worn out to ask. But not many can afford this type of assistance.
Advocacy is so important when it comes to CRPS. I am fortunate that all of my doctors work in the same hospital / medical center and have access to each other’s notes and records. Many patients see doctors at various hospitals, offices, and specialty centers. Keeping these doctors informed of progress or worsening conditions can be extremely complicated. Especially when a medical condition takes a turn for the worse.
A common phenomenon for CRPS patients is a “flare up.” Basically your body’s symptoms increase with so much severity that you can barely function. “Flare up” makes you think of a lost hiker in the woods, desperately seeking help in a dense forest – unsure of where to go or what to do. They send a flare up to the sky and wait for help. But what if help can’t find them? They start to wither and fall to pieces. The rescue team, in this case my own pain management team, worked tirelessly to find a way to rescue my leg from it’s “flare up” and return “home.”
IV Ketamine has been known to treat CRPS patients with varying degrees of success. I was given 30 mg / hr of IV Ketamine which was quite a dosage. IVIG also known as immunoglobulin can “provide relief for people suffering from CRPS and helps modulate the immune system for treatment of chronic pain.”
These treatments were administered in the ICU of USC Keck hospital and were monitored by my pain management team, rheumatologists, and various nurses. The hardest part in dealing with this situation and my many other hospital visits has been advocating for myself. Due to the fact that my parents and family live in the Midwest, I am typically dealing with my medical problems on my own. Don’t get me wrong, I have a wonderful network of friends who have tirelessly stood by me (who even slept over in the ICU on the floor with me) but patient advocacy is one of the hardest aspects of chronic pain.
Doctors and nurses always ask you to rate your pain between 1-10, 10 being the worst. Giving your pain a number doesn’t feel specific enough, but when you’re in agony the words don’t always come out. My friends help fill in the blanks (“Her leg is killing her, she needs more meds”) but I also need to stand firm when the medical system is failing me (“This treatment isn’t working and I want to try something else.”)
Staying quiet and hoping someone will see your pain and help you - that is the stigma CRPS patients have to fight every day. Our pain is invisible to other people and we must tirelessly explain our symptoms in great detail. Every patient is different – my CRPS symptoms are quite severe but also vary from some of the other patient’s they have treated. My leg burns like a forest fire from my hip to the tip of my toes. I cannot have a blanket resting on my leg, nor can I stand to have people lightly touch it. And much like a forest fire, I need help quenching the flames.
Editor’s Note: Katelyn suffers from CRPS and live in Los Angeles. She earned her M.A. from Carnegie Mellon and has the aspirations to be a writer and producer in the entertainment industry.