As a Spoonie myself, I spend a lot of time advocating for the chronic pain community. I speak with my care providers and teach them about my condition, I talk with my friends and family and try my best to express to them what life with constant pain is like. I write, man do I write, in hopes of reaching a wider audience and showing people how someone who looks so “normal” can be fighting such an epic fight.
The thing I ask for the most in all of these efforts is compassion and empathy for those who are living with invisible –and not so invisible- illnesses. I’ve been accosted by people in the parking lot because I don’t “look sick”. I’ve had family and friends fall away because they simply don’t understand. I’ve had cousins comment on the medications I use and uncles say things about how I’m just “so old”. Even the most loving people in my life make comments from time to time that remind me just how much they can never really understand this. When these things happen it’s really easy for me to be hurt, to want to lash out and say “How dare you say that to me when you know what I’m going through?” but I’m not so sure that’s the answer.
After I wrote November Was a Giant Waste I got a text message from my brother saying that he had read it and he offered some advice of sorts about not being too hard on myself when I don’t get things done. He referred to times when he had unproductive days at work, or spent the day being lazy on the couch.
I was torn. Here is my brother who completes 30+ mile bike rides in the dead of Minnesota summers comparing his “lazy days” to my 10 day fatigue streak. They are not even close to the same thing. Unless his body straight up refused to hold its own weight thus resulting in an unproductive day or two, I don’t think he knows what he is talking about. Believe me, I thought long and hard about telling him just that. (If he is reading this, he knows now anyway.) But I took a breath and considered his intentions and decided that it wasn’t necessary for me to explain to him all the ways he couldn’t understand what I was dealing with.
That wasn’t the point.
The point was, with a compassionate heart my brother reached out to me to offer consolation in the only way he could. He tried his very best to put himself in my shoes, based on his own life experiences, in a means to connect with me and let me know I wasn’t alone.
What more could I possibly ask of him?
The more I put myself (and my pain) out there in the world the more I find people respond with words of encouragement, articles on studies or religious babble about how this is all part of God’s plan and more than half of it tends to sting a little when I get it. Often times it’s something that isn’t really related to my particular brand of pain or it’s not something I would choose for myself. Sometimes it’s downright ridiculous but the intent stays the same.
They are trying to be supportive.
So I breathe in the comfort and breathe out the desire to express, once again, how no one really understands this and I thank them for thinking of me. Whatever other opinion I have about the article or meme or quote I keep to myself or share with The Hubs because it’s not really the point.
It’s hard, really hard to wake up every day and have pain. There are days when you literally just want to give up and live in a hole, or maybe just quit life all together. I get it. The idea of doing this for the next 50 years stares me in the face at times and I have no idea how I will make it through. And no, no one will ever understand this the way that you do but please don’t fault your support system for being healthy.
There are people who will say awful nasty things to you, and there are plenty more who will quietly sit by and judge what they can’t see. Those people absolutely need to work on their empathy. But those people who are trying their very best, and at times fall short have earned themselves a free pass in my book. The next time you are confronted by a situation that stirs your “You don’t get it” reflex consider their intentions first.