JC Hannigan is a dear friend of mine. She lives with a rare chronic pain disorder. You might not realize this when looking at her. She looks "normal," whatever that means. But 24 hours a day, she copes with constant excrutiating pain in her bones.
There are many myths about chronic pain sufferers, such as the idea that they are "making it up" in order to "get attention." JC Hannigan sheds some light on what it's like to live with chronic pain.
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I have a rare chronic pain bone disorder called Multiple Hereditary Exostoses (MHE). I have bone growths/spurs/tumors that grow on my regular bones and joints. This causes me daily pain. Some days are worse than others, but pain is always there in some measurement or another.
I can't count how many times that I have heard "she must want attention" throughout my life. Maneuvering down the hallway at my high school awkwardly on my crutches, exemption from gym class and weeks of school missed due to surgeries, recoveries and generally bad pain days.
She just wants attention.
I have never ever wanted attention like that. I have never enjoyed the fact that I have something that segregates me from others; because having a disability does segregate you. Most people can't understand it, or it makes them uncomfortable. It makes you feel alone, especially when people think you "just want attention".
For me, my disability is almost undetectable, but not entirely. My limbs are shaped differently and I have scars - a lot of them. Upon first glance, I appear "normal" but I am not. I limp, and I suppose I carry myself differently as well. But because it isn't a blantantly obvious disability, and because I don't always need a cane/walker/crutches to help me walk, a lot of people have assumed that I am faking it.
Faking it to get out of gym class. Faking it so that I don't have to participate in the Terry Fox run. Faking it so I can get the school to pay for a laptop and more time to write my exams. Faking it so that I seem special. Faking it for attention.
The fact that many people thought I was faking things for attention throughout my childhood and adolescence spurred a lot of anxiety that only grew and worsened after every surgery. I knew I'd be coming back to countless rumors about myself, I tried to act unaffected by them...I tried to laugh it off but it stung and it made me anxious because I felt like I had to explain myself a billion times each time I had a surgery or could attend something, and explaining myself did not offer any relief. It only made me more anxious.
I hate crowds. Even when I don't need walking aids, I hate being surrounded by a lot of people. My heartbeat races and my palms get clammy and my head hurts and I go into flight mode. Even now, the question "what do you do for a living" or "what do you want to do for a living" sends me into an almost catatonic state. Those questions always end up leading to me having to explain my disorder, because I feel as if I need to justify what I'm doing (or not doing).
I am twenty-five years old now. I no longer have to awkwardly maneuver high school hallways in crutches, as a stay-at-home mom I have the luxury of hiding away from the public until I heal up a little. The times that I do have to go out carrying a cane or crutches or walker, my anxiety is through the roof. I shake, I sweat a crazy amount, and my thoughts swirl and whirl, convinced that every single person that looks at me is judging me, convinced that I am faking it for attention. Convinced that they think my disorder is "not as bad" as others, and therefore that I do not need the crutches/cane/walker like an "actual" disabled person would.
Yes, I've been told that before. Just once, by someone who is no longer a friend. "But it's not like, an actual disability," they had said after I explained my disorder. Hearing that guts a person, you know? It makes you feel insignificant. Less. Would I be questioned so much if my disability was better known?
I try to combat my anxiety with deep breaths and a weak attempt at centering myself, but I'll admit; I am not good at centering myself, so I tend to avoid things. I avoid things like wearing flipflops to Walmart (because someone always points at or stares at my toes), wearing things that reveal my legs. I am forever torn between educating people about my disability and telling them off for assuming that they have the right to ask me such deeply personal questions.
One thing is certain; I don't do any of this for attention. The pain is real, the need for walking aids is real. The anxiety that comes with it is real. The only thing I want is to be heard and understood for being who I am.
JC Hannigan is the author of New Adult series Collide. She is the content manager for Stigma Fighters Canada, a division of the mental health non-profit organization Stigma Fighters. She lives in the Toronto suburbs with her husband, two young boys and her dogs Bane and Ivy. She enjoys sarcasm, coffee, and ketchup chips. You can read more from her on Sarcastica.ca