It’s unbelievable how much I expect of people without ever actually asking them to do anything. Talking about my pain is not easy for me, and the only reason this blog works is because I can sit somewhat anonymously behind a computer screen rather than look you in the eye. It’s not like I have an autism spectrum disorder or any other social difficulty (of which I know), it’s just that I find it hard to admit I’m struggling.
So this is what inevitably happens on any given day when I don’t offer any report of my pain level and I do my best to hide how I’m truly feeling: I become physically and emotionally exhausted. I struggle up the stairs when someone calls my name, I agree to go for coffee when all I want to do is lie around, and I stay out later than I should because I don’t want to be the first to leave. Sometimes I hit the wall at a pretty convenient time, whether it’s when I hobble out of the car and into my home for the night, or when I finally make it into bed. But more often than I’d like to admit, I realize I’ve run out of rope (or spoons for those who know the spoon theory) at an inconvenient moment.
I could take you through so many unfortunate stories from the past decade which all end in an embarrassing/dramatic exit. There was a Mardi Gras parade (I can barely manage one a year) that my dad, using all his fatherly instincts, somehow figured out a way around the crowds/traffic/blocked streets/floats so he could get me home. There was my twenty-eighth birthday dinner that ended early with my brother running out to his car in the rain and driving me home. And there was a night out with friends that ended with me putting myself in a cab, unable to tell anyone where I was going or why because I knew I’d start crying as soon as I opened my mouth.*
Whether I’m out celebrating or it’s just a normal day at the office, I find myself wishing those around me understood how I feel without me having so say a word, which is, frankly, asinine (and a bit narcissistic). I silently curse to myself when people ask me to do something I just can’t do, or I want to lose it if anything is asked of me on a bad day. But so few people actually know what is outside my comfort zone (because I don’t tell them), and even fewer know what it looks like when I’m struggling (because I don’t tell them). Yet I end up blaming them for their ignorance.
I hate that my chronic pain extends beyond me and to my family and closest friends. For a while, I wasn’t even sure if I wanted to get married and start a family, because I know I’m not at my best and wanted to minimize the damage, so to speak. I stay silent not only because it’s really hard to ask for help and to admit when I’m in pain, but because I don’t want to burden anyone more than I already do. The simple fact is that if I was more open I’d probably take a little stress off them; they wouldn’t have to guess what I was thinking or feeling because I’d tell them directly or they’d know they could ask and get an honest answer.
For all who are reading this and know me, I’m working on it; I promise! Treat me however you’re most comfortable, and even if I react poorly in the moment, I can almost guarantee that I will find the error in my ways as soon as the meds kick in. (And if I don’t, or if I do, feel free to call me out!) To everyone else with chronic pain or another chronic condition, I hope that you’re better at being honest than I am.
*When you list it out as I did above, it sounds like I have this really fantastic, vibrant social life. Let me assure you, I do not. I’m working on it, but I definitely spend more nights home alone than out with people. I mostly only put myself in compromising positions when I feel obligated and/or it’s a special occasion. Sometimes I’m just desperate to be a part of the celebration and I want to join in, even if it’s just a small way. But as we all know, there’s no such thing as doing anything “small” when you have a chronic condition; it’s all a big deal.