It’s been awhile since I have taken the time to write – aside from a few shitty, short poems that are irrelevant to the content of my blog and life.
I’ve been incredibly busy this summer. Between managing my health and preparing for my final year of my degree, it’s been difficult to force myself to engage in hobbies which – yes – sometimes become a chore. We can blame the depression typically associated with unending physical pain and illness.
With my irrelevant excuses for my absence out of the way, I’d like to ramble about something that has been eating eat the remaining fragments of my black soul for months.
I’ve become this person who wears a shield of strength for those with disabilities and atypical neurologies. I have crafted this careful, firm and arguably profane voice which challenges preconceived notions and thoughtless ideas about people like me. People with Ehlers-Danlos, or whatever other rare disorder, or whatever. In doing so, I’ve been quite open and candid about my own illness. I’ve openly shared my symptoms, struggles, weaknesses and flaws. I’ve breathed stories of heartbreak and grief. I’ve opened up about my failures; failures to accept, or withstand my disorder, or as I have affectionately named it – my genetic lottery ticket. I let anyone who was willing to listen in about the days when I want to die and the days when the pain and fatigue is simply too much. Also, I’m pretty sure there is an incriminating Facebook post somewhere when I reminded everyone to remember I was a badass, after my first brain surgery. Drugs were involved.
But there is a casualty of war in doing so. I have yet to find any fellow zebra, or chronically ill person, discuss this casualty. I want to talk about it as candidly as I have done all other things.
People in my life have begun to minimize their pain and suffering. I have a wonderful cousin who is struggling to find a diagnosis for her unbearable back pain. She is probably one of the most compassionate and empathetic people I’ve met. She’s so different than I. She has far more patience, than I can bear, for people. She speaks kindly, while I laugh out obscenities. And here she is, when she talks about her pain to me, she says how it in no way compares to mine and she can’t imagine what I must go through, and how she feels she’s whining and complaining.
This is not okay.
I need to get something straight for people. Pain is pain. We all experience it, admittedly, at varying lengths and degrees. My chronic pain isn’t worse than my cousin’s. It’s different. I mean, sure, if we’re going to objectively measure (and objective measurements only really have a place in an ER or trauma ward), her pain is probably worse than that time you stubbed your toe really hard on the side of your desk that juts out awkwardly. It’s probably worse than the time I slammed my elbow into a door frame. Or dropped a hammer on my foot. My pain, on the daily, is probably worse than when your four year old skinned his knee when he fell off his bike.
But I’m not really referencing small, acute moments of our lives when something hurts. I know that time you stubbed your toe really fucking hurt, though. However, there is no badge for who has it worse. Let me be clear – I’m not saying chronically ill people are guilty of intentionally minimizing the pain of those around us. But our rare or rarely diagnosed disorders tend to sort of blot out the sun a bit, and sometimes it’s hard for that light to reach those around us who have different kinds of pain – chronic knee pain, a bad back, or that unending neck pain. My cousin was minimizing her pain. If I had to guess, it’s because I am so open about my pain, surgeries and hospital visits, so she had this clear image of what she thought ‘bad enough’ looked like and her pain effects her in a different way. Somehow, maybe, she felt her pain just didn’t match up to mine. I corrected her every time, if you were wondering. Her pain does. It sucks just as much.
Just because I have a genetic disorder you’ve never heard of, doesn’t mean your chronic back pain doesn’t hurt the same way. You deserve a space with me, with your friends, with your family to talk about that pain, how it effects your daily life. You don’t need some life-altering diagnosis (MS, GP, EDS, blah blah blah) to be a part of the pain train.
It’s not just my cousin. I’ve caught my husband minimizing his pains and aches. I’ve caught friends online doing it. I know this comes from a place of love. These people are trying to express they understand the severity of Ehlers-Danlos and what I experience. I do appreciate that sentiment. I appreciate the love and care. It’s just not healthy though – for them or me – or let’s be fucking real here – anyone. We can experience pain together and commiserate together. Don’t hide in the shadow of my illness because you feel your pain doesn’t meet the metric for shitty enough. It does. I want to be there to hold your hand. I want to be with you, in that sea of shit and pain, when it keeps you up at night, when it makes you cry, when you just don’t know if you can handle it anymore – I want to be the person you come to because I get it.
We need to do better to make space so our friends and family know that, while our illnesses consume our lives and dominate our dinner-table conversation, their pain is just as valid and there is no need to minimize it. We don’t own the patent on the fuckery that is pain. It isn’t exclusive to our weird diagnoses. It’s the shitty side of the human experience, and we all deal with it. This planet is fucking huge. I think there is enough space for everyone’s suffering.
This post is dedicated to Katelynn.