The Burden I Carry Is Not Light: An Expression of the Emotional Weight of Hidradenitis Suppurativa
The burden I carry as a hidradenitis suppurativa patient (HS) is not light, it is dark. It's as if Dante's Inferno and the book of Revelations had a baby, and dropped it off to be raised by Love Death & Robots Volume three-episode six. Even with this analogy, I'm sure you're just like, huh? Just Google all three and you'll understand where I'm coming from.
I am on a lifelong journey with HS
I've tried to articulate my reality through words and capture it with visuals. However, nothing seems to do what I've experienced justice. And trust me when I say, I'm on a lifelong journey to figure it out even if that expands beyond art into other sectors. What those may be, I have no idea, but I'll cross that bridge when I have to.
What I'm also exploring is why there is a need to even express what I'm going through. A part of this is because, for me, it's the only way to make sense of why I've been dealt the cards I hold in my hand. Expression to me is like water to a fish, its absence means I will not and cannot survive. Without it, I am an aquatic animal trying to adapt to a foreign land by flopping and gasping, gasping, and flopping.
I can't just pretend everything is fine
While these are gruesome and harsh depictions, analogies, and metaphors, they don't even come close to capturing what I feel my existence is like. What I wish was truly understood is how chaotic and traumatic it is to have my body day in and day out attacked by abscesses, scar tissue, and chronic open wounds that not only never stop draining but reek to high heaven. It's as if my body hates me. And in a world that has told me since birth that I am not valuable, to have my body communicate that too is like a knife twisted into both kidneys.
Even if my body is just trying to communicate that something is off, it has a wild way of showcasing that. I wish this was one of those positive blog posts I usually write but sometimes we have to be realistic with where we are. I personally am not into toxic positivity because I can't love and light my way through such a burdensome experience. Pretending everything is fine just sends me further into the hellscape that is my mental health sometimes.
If anything, this post is for those of us out there who just want to stew for a while. We know we will get up and wash off and continue reading and researching, connecting and communicating, but just for a moment, here is the ugly, dark, truth.
Have you ever experienced painsomnia?