THE PARADOX OF PAIN TOLERANCE
Marco Orlando
Gym class was a nightmare for me growing up. If you’re like me, you probably don’t have very many fond memories of gym class when you were in school either. I hated getting changed for gym class in the locker room with 10-12 other kids making fun of me. Mandatory participation in team sport dynamics for 45 minutes two or three times a week with people I was already having issues with during normal school hours was not my idea of a good time. Don’t even get me started on those “presidential fitness tests” from the 90s featuring the dreaded “mile run.”
I was a fat, clumsy, accident-prone kid. With my luck, I’ve had my brains scrambled just by being in the wrong place at the wrong time. I’m not kidding. I had a softball leave its imprint on my forehead once back in the fifth grade, and it stayed like that for about six months, almost up until school picture day the following year. Some people have seen me around at live wrestling shows in the past, and they’ve seen for themselves how passionate and knowledgeable I am about it. And when they would ask me why I myself am not a wrestler, they couldn’t believe it when I would explain to them that I’m simply not cut out for it physically because I am a horrifically uncoordinated individual.
Even so, I have an abnormally high tolerance for pain. High pain thresholds can be relatively common in people with disabilities, especially those of us on the autism spectrum, like me. I’ve taken numerous blows to the head over the years. I’ve lost track of exactly how many at this point. A lot of times, I would just shake it off and go about my business like nothing had happened. Although looking back, given what we know now about head trauma and brain injuries, I probably should have been evaluated for a concussion at least a few times.
In my personal experience, there have been times where I haven’t always been able to put into words if something was bothering me. Sometimes, I may not even be aware that there’s anything seriously wrong with me unless someone (usually my mom and dad) brings it to my attention. At that point, I don’t always know how I should react. It can be challenging for me to try to find the right words to describe what I’m feeling or what hurts if I should need medical attention. And it’s frustrating when it feels like no one is listening when my parents and I try to advocate for my needs. The current pandemic has been making matters worse in this regard, further exacerbating what is already a nagging issue.
It should not be so hard for healthcare professionals to take us seriously and do their jobs when we say something doesn’t feel right. All too often, many of our legitimate ailments are underdiagnosed or left untreated. These mistakes can sometimes lead to medical malpractice and could potentially kill us. Healthcare professionals should make more of an effort to listen for the “untold story” and pay attention to what isn’t being said when we try to advocate for ourselves and what we need in emergency situations. Not being able to speak is not the same thing as not having anything to say. All behaviors are a form of communication. Look and listen for context clues. Be patient. Be attentive. We need to be able to trust healthcare professionals when we tell them something is wrong, and we’re counting on them to help us in an emergency.
If you are self advocate and would like to share a blog post with us please email Laurie Coldwell at lcoldwell@sufumaine.org
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