In 2016, I didn’t know what was causing me constant chronic pain and myriad other symptoms. But even–especially, actually–before I had names for my conditions (Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome, Chiari Malformation), my conditions had me in a chokehold. Even when I was doing other things, thinking about my pain consumed me. When would it flare up again? Was I a burden on others? How long would I be able to keep doing the things I loved? I let the pain take control: of my thoughts, of my pain, of my life.
I still pushed through, and I did accomplish some significant things. I graduated with my master’s degree. I started my first professional job. I was a mom and a wife. But I was in pain first. My identity as someone who was in pain and sick a lot became my primary identity. Everything else mattered, but it was secondary. I felt like a slave to my pain.
My correct diagnosises began in late 2016, and so did my turnaround. It’s not that my symptoms got all that much better, especially not right away: though having the right management program definitely helps tremendously. But the number one most important thing naming my illnesses did was strip them of the massive amounts of power they had over my life. My enemies were no longer unknown, and I took back the reins, took back control.
I never really thought about control until fairly recently, when my brother started talking to me about how everything in life boils down to control and people wanting control. There are many, many things in life we have no control of. For the most part, chronic illness is one of those things.
I cannot control when my diseases are going to flare up. This is just something I must accept. Sure, there are sometimes preventative measures I can take, but I sometimes flare because of the weather, noise, stres…Nothing. I cannot possibly minimize all factors.
What is in my power to control, though, is what I focus on. Do I focus on the unpredictability and uncontrollable nature of my illness, which leads me to feel weak and powerless? Or do I instead try to give my conditions as little attention as I possibly can, and focus on what I can control?
It all started small: with a list. A list of things that made me happy. There were big things on the list, like my relationships with my family and friends; my relationship with God; meaningful, fulfilling work. And there were also lots and lots of little things: freshly painted nails, blueberry coffee, Christian music, reading certain books of the Bible.
From there, I decided to make decisions that maximised happiness, and I found that plenty was in my control: little things that made a big difference. I was in control of making sure I painted my nails once a week, made myself coffee, cultivated relationships with my family and friends, went to work even when I had a bad Chiari headache because I know I love my job and it’s meaningful to me even on the bad pain days. I listen to positive music and internalise the messages; I try to read my Bible most every day.
Some days I have less control: I can’t even get out of bed. But when I’ve been focusing on how much power I truly have on the other days, something amazing happens for me: I feel powerful, even on the days I can’t get out of bed. My overwhelming pain feels temporary, and I know it is not all there is to me, even when it is all I feel. The positive messages I send to myself on all of the other days push me through the really bad days. And even on those days, I am not controlled fully by my conditions. They hurt me, they affect me, sure. But I am always stronger.
This is the first post I am writing as part of a series on changes I have made in order to change my perception on my illness and therefore how in control I feel: not of my illnesses necessarily, because they are constants, but of my life that my illness is a part of. My illnesses provide challenges, constraints, and boundaries, but I am intuitive, strong, and wise. I am so much more than my illnesses. I have them now, and I am doing everything in my power to keep from them having me.