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When You're Afraid to Call 911

I am 24 and I have a neurological disorder called complex regional pain syndrome. I have been battling chronic pain for six years and will spend the rest of my life enduring this condition. I manage my pain with the aid of a service dog and I use prescription opiates responsibly. I am strong and intelligent. When it comes to doctors, I am defensive first, and relaxed never. Dueling with the pain for this long, I have grown to mistrust and fear people in the medical profession. I am afraid to call 911, because I believe they will handle me wrong, make the pain worse, or refuse to help me. I am afraid to ask for help. They made me this way. 

I am afraid to be handled by paramedics. I am afraid to be handled by new doctors. Even going to my own doctors causes me mild anxiety. I trust my current doctors, but I have been conditioned for six years to fear and mistrust anyone who calls themselves a doctor. I’d love to blame my fear solely on my condition, but that blame is shared by every doctor that called me “crazy” and caused additional pain when it wasn’t necessary. 

When I have to be put under for a medical procedure, my last moments of consciousness are panic. When I first open my eyes, I am filled with a rush of adrenaline like a soldier going into battle. I feel my body come to life, fighting the dizziness, fighting the fog, and lurching drunkenly away from the nurse as she tries to pat me on the shoulder to reassure me everything is OK. If I were an animal, I would wake up growling, eyes fiery, and nostrils flared, ready to bare my teeth and keep the “helpers” back. 

packet of information about crps
Packet of information about CRPS and how it affects me, which we give to every doctor before they can work on me.

In my experience, it doesn’t matter how calm or patient or professional or prepared I am with documented information regarding my condition. I am dismissed, I believe because they think they know more about me and how to treat me because they went to medical school and I didn’t. Most doctors read just a paragraph, a definition. It took 14 doctors to diagnose me correctly because some either knew nothing of CRPS or I didn’t meet all of their criteria. I have scoured the internet, talked to fellow warriors, and most importantly, I have lived it. I know the pain and the condition intimately. I am better prepared to manage myself and to instruct them on how to handle me than anyone in that hospital.

I wish I wasn’t afraid. I wish I could feel safe and secure and relaxed at the thought of having to call the paramedics one day. They are trained medical professionals, who I should be able to trust with my life. But I don’t. The truth is, I doubt I will ever trust them. Currently I have three doctors I see on a regular basis, and luckily all are doctors I trust, respect, and feel safe around. My first appointment with each, however, I walked in ready to fight. Ready to defend myself. They proved to me that they could listen, that they genuinely cared, and never once did they assume I was drug-seeking. I acknowledge that these three are a rare find, especially for a CRPS patient. 

It would be easy to say I’m overdramatic. Once you have sat in a waiting room for hours at a level 10 on the pain scale, been harassed and dismissed by a nurse, not allowed to converse with your doctor, denied proper care, explicitly labelled an “addict,” and chased out of an ER with threats of being forcibly controlled by security after you requested better care, you won’t see my fears as overdramatic. Experience it just once, and the fear will grow. 

I am 24, I have a chronic condition that requires ongoing medical treatment, and I am afraid to ask for help. No one should ever have to be afraid of assistance. Doctors began their trade to help their fellow man, not to be dreaded like the monster at the end of the hall. One day, I will have to call 911, and I know that on that day, I will consider not calling at all. My fingers will dial the numbers, and the soldier within will rise up for battle, sword drawn, eyes cold, and mind focused. I will grit my teeth, force myself to overcome the blackouts, and stand my ground. Help comes at a price. I wish I wasn’t afraid to call 911, but that is my reality.

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