Why I'm Speaking Out About My Chronic Pain
How do you learn best? My learning style is very hands on. I benefit from taking notes, as the physicality of writing down information makes it easier for me to store. I also appreciate, and can better recall, demonstrations over presentations. But that’s just learning on the surface. How I truly evolve as a person is by engaging in difficult conversations – asking questions that might seem trivial to some, listening to others’ opinions which may oppose my own and seeking out tough-to-swallow truths in the hopes of discovering new depths.
Weaving chronic illness into everyday conversation is a lot like speaking about grief. Each day feels a little bit like the last, so the dialogue can get stale. But that doesn’t mean it isn’t real or any less important. No one really knows the right thing to say – so they often choose to avoid the subject matter entirely. I am guilty of this, too. It can be tough to ask people going through challenges about them directly. Sometimes, I think I am scared of the answers. Other times, I am not sure if I will know what to say in return. What if I am not comforting enough? What if I am just another reminder of their hurt or loss? What if they are at their breaking point and my question pushes them ever so slightly over the edge?
But here’s the danger in that logic. If we do not talk about what makes us sad, what demons we face or what battles keep us up at night – we are only encouraging others to hide them, too. And this is not OK. This creates a chain reaction of fear which is deeply rooted in something so simple, yet so damaging: mystery. We fear what we do not understand. And we each have a responsibility to discuss whatever haunts us, with searing honesty. We can’t expect other people to ask the tough questions if we aren’t willing to bridge the subject matter in the first place.
I used to hide my disability and struggles with chronic pain from the world. When I met people for the first time, I would speak about my love of headbands or my deep affinity for sending snail mail. I would think, speaking about how much pain I am in is not what they want to hear because it’s a downer. So instead, conversation would flit in and out of superficial subjects like the weather or how good Sriracha is on every food group. But this pattern of avoidance did not help anyone, you see. Frank conversations about what people go through need to happen. This is the only way we can move towards acceptance and better representation of that which makes us different. Plus, chronic pain is my reality, and is the ocean in which so many other people are drowning, so it doesn’t hold more or less weight than a full-time job or a couple’s plan to get pregnant. It is my truth. It must be spoken.
In an effort to heed my own advice, I have been openly speaking about my pain with strangers. Don’t get me wrong, it doesn’t come up in the initial introduction or in line at the grocery store, but I don’t hide it as much anymore. This exchange is fundamental to learning more about how other people orbit the sun. After all, if we don’t explore how others live, how will we ever evolve?
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Thinkstock photo via OGri.
Kat is the community engagement lead at The Mighty. She's a writer, chronic illness advocate, and author of the award-winning children's books SURGERY ON SUNDAY and MIGRAINE AND MIA. Her writing has also appeared in various print and digital outlets. She lives with chronic migraine, bilateral vestibular loss, lupus, oscillopsia, chronic ear disease, and a rare headache condition called SUNCT syndrome. She's also recovered from 16 surgeries. (P.S. In case no one has told you yet today, you're worthy of a bright life! You got this.)
xokat