Theoretical vs Actual CRPS Cognizant
I live with #ComplexRegionalPainSyndrome, and recently I made a discovery when it comes to educating others about CRPS. A discovery I feel I should share, to help others understand the disconnect that often happens with friends and families of those with CRPS.
In the beginning of my diagnosis, I didn’t have a support system. Friends and family who had known “healthy” me for years couldn’t wrap their heads around an invisible pain condition. They were 800 miles away from me when the pain started, and never got the chance to spend enough time around me to learn that not only was it real, but that it was devastatingly painful and debilitating.
In the last two and a half years, I have encouraged myself to become more open about sharing my life with CRPS, in the hope that it would bridge the gap between my family & I, helping them to understand my new life. I began writing Facebook posts about the bad flares, sharing about my accomplishments, passing on articles that discuss new research discovered or new treatments being tested, and writing articles for the Mighty about what life is like for me. I answer questions, and I’m open about what level of pain I’m in (at least I try to be). I still hide the worst flares some days, because I can’t always handle needing to take care of their distress from knowing I’m in distress. My friends and family hit a turning point about two years ago, once they began to accept my condition and see how much my service dog helped me do each day. Perhaps seeing what he did for me helped them understand just how widely CRPS impacts my life. I need help sorting laundry, loading a washer, moving laundry baskets, opening or closing doors, standing up, and more. The point is, my people began listening for the first time in years. They began being more supportive, more understanding, more inquisitive about it, and were genuinely invested in my life with CRPS.
Recently, I had the chance to see many of these people when they made a special trip out to the countryside to come to my wedding. I was ecstatic about getting to spend time with the people I grew up around, and was eager to see all my hard work of educating them about CRPS be put into actual practice.
I thought that because I had educated them, shared with them, and been open with them about the pain, how it affects me, what Robbie helps with, what the pain feels like to me, and more, that they could be as supportive and understanding in person as they had been over the phone or video chats.
This was not the case. I got gut-punched by ignorance, toppled over by lack of thought, & swept away by my own expectations.
At the time, I couldn’t understand it. Everyone was supportive, asking me how I was doing, if I needed anything, what they could help with, what pain level I was at, and if I needed to rest, but it ended there.
I discovered an immense shortage in their ability to listen to what I’d said about CRPS and its affect on me, and then make connections to real-life instances. It was incredibly confusing, disheartening, and frustrating.
Online, I could share articles about the irritation of healthy people taking advantage of handicap spaces and my healthy friends would be supportive, and in agreement. But then in real-life, one of them blocked several handicap spaces to swing her car over to let another friend out. I was so furious I couldn’t even speak. I knew if I opened my mouth, it would erupt with a stream of curse words at her ignorance. Yes, it was only for a few minutes, but that doesn’t negate how incredibly thoughtless and disrespectful that was of her towards disabled people everywhere.
In an email, I could share how I had a rough day of errand shopping because there was lots of walking, standing on concrete floors, or standing for long periods in lines that triggered a massive pain flare in my legs and hips. The friend or family member I’d be emailing would be empathetic, relating that they could see why such activities would be painful for me. Upon being in the moment, and discussing it as it pertained to specific situations, however, it was a shock to them that standing still for 15 minutes or longer might be extremely difficult and painful for me.
Over the phone, I could relate to one of my closest friends that I was unable to go to places with loud noises, vibrations, uncomfortable seating, or do things that needed a lot of movement because of the pain and/or sensory overload episode it would trigger. Then they planned an activity of sitting on metal stools, in a concrete room, doing crafts that required significant hand dexterity, where I’d be subjected to others using hammers nearby. The repetitive slap of hammers upon the table made it impossible for me to touch the table and made my ears feel as if they were going to explode inside me from the resounding clack of metal hammer slamming down upon a wooden object, reverberating against a metal table. I was furious, but didn’t say anything because it was a pre-planned event, I had wanted to be surprised, and I wasn’t sure I could gracefully tell them how terribly wrong they were without being hurtful. I blamed myself, telling myself that I must have not done a good enough job explaining how CRPS affects me; except that I did.
This article isn’t meant to place shame or blame on anyone in my life. That’s not my intent at all. I share each of these experiences to show the massive amount of disconnect that happened that weekend. To show that even if you do all the right things by trying to educate, and trying to listen & use what your chronic friend has taught you, there will always be a disconnect.
I’ve spent a lot of time since the wedding thinking things through, the same way I would any problem I encounter. And I think I’ve figured it out.
When a police cadet is in the academy, they learn a ton about being a police officer! They read about laws and procedures. They practice honing their reflexes to shoot the cardboard villain, not the cardboard grandma. They learn about how to work with a partner, how to work a beat, how to read someone their rights. They learn what not to do. They learn how to properly case & clear a building. They learn massive amounts of correct, factual information from both books and experienced officers, that the cadets are then expected to properly implement when they graduate and join the force.
Most rookie officers will make lots of mistakes along the way to learning how to be a good police officer. Up until now, they’ve been learning how to be a good police officer, but now, they’re thrown into the streets and expected to be one. They know how to clear a building, but they won’t always do it right the first few times. They know the laws, but they don’t have the experience of dealing with them in the moment, and knowing how to work with the shades of grey that apply within the justice system. One day, with enough real-world, real-life, in the field experience, they will be great cops. As rookies, they got a ways to go.
But everyone understands that, because it’s just the way it is. It’s no one’s fault. Over my wedding weekend, I was surrounded by rookies, and expected them to already be great cops.
I’ve realized that my friends and family who live hundreds of miles away may never be real-life CRPS cognizant. They may only ever be theoretical, CRPS book cognizant. They won’t have the chance to graduate, because what they need to graduate is a way to be in my world on a daily basis, experiencing the bad flares, the sudden flares, the weird flares, and the good days where the flares are minimal. They won’t be there to see me shift my weight in a store the longer I have to stand on concrete floors. They won’t come over just to watch Netflix all night while I lay in bed. They won’t have the chance to squeeze my hands during the flares that crash into me like waves. They won’t be close enough to go to doctor’s appointments with me and hear how I have to advocate for myself. They won’t have the option to resist the urge to jump up to help me, but instead hold back to let my service dog do a task for me. They won’t experience the gut-twisting feeling that my husband feels when he watches my face twist in pain, or the way his breath catches when he watches me do something he knows will trigger pain.
They can read my stories. They can listen to me rant over the phone. They can empathize with my doctor-horror story sagas. They can do their own research about CRPS, or read new information I send them. They can tell me they love me, that they are proud of me, and that they are here for me. That needs to be enough, because from where they are, that is their best.
I have a select number of people in my life who live close enough to me and see me often enough that they are either already real-life CRPS cognizant, or are learning how to be. My husband is excellent at being both real-life CRPS cognizant and theoretical CRPS cognizant. My best friend here is the same. My dad is one who has somehow managed to figure out how to be both, despite living states away. He isn’t perfect, but somehow he is doing it. I am fortunate to have them, and am grateful for them every day.
I am sad that the people who I grew up with, and the people who raised me will likely never be real-life CRPS cognizant. I think they could be, but it would take a lot of attention to detail and commitment on their part to be immensely aware and present in each moment, when we are able to spend time with each other, that it might take away from just enjoying the time we have together.
I think I can make my peace with that, though I imagine that I may struggle with flashes of frustration when I spend time with those who want to be real-life CRPS aware, but just aren’t able. It’s not their fault that they live too far away to go out on a beat with CRPS. It’s not my fault either. It’s just the way it is.