When I decided to officially stop trying to come back from “medical leave” — I live in the US, so basically being unpaid to be sick :’) — it was the best decision I had made in six years. It was a hard decision, and it hurt me to make it, but in hindsight, I wish I would have left months prior, and maybe just went to a job that appreciated my talents and cared about my health, mental and physical.
I’ve handled mental illness since I was young, adapting to therapeutic and mindfulness techniques early in life. I learned all that without a real therapist and amid some serious traumatic life events; I learned to be a survivor to survive.
And then the physical pain comes at 27, and I just… fail. Fail to understand the sheer enormity of what my body was really going through, fail to protect it, fail to adapt to my ever-changing body function, FAIL TO SURVIVE. It was my first lesson in how much, in today’s modern world, we value our minds before we ever value the bodies that house that amazing mind of ours. And it’s not all ours minds faults — it was actually telling us the whole time something was off. Yet, we still continue to listen to professionals without that exact experience, instead of intuition — the same one that taught me to survive at a time that didn’t support mentally unstable people — personal knowledge, gut instinct, and living in my body 100% of the time.
My second lesson in how little we value our bodies in pain was the issue of pain medication. The opiate pandemic was awful and took so many lives, and still continues to my own loved ones. It also bred one of the biggest medical problems people with any kind of pain face: getting it prescribed for conditions that need those pain medications. Lab panels? THEORIES. Pain log/diary? CONJECTURE. EKG/CAT/MRI scans? WE CAN (NOW) SEE IT BUT WE STILL THINK YOU’LL SELL THEM. The roadblocks seem so infallible, almost despite those roadblocks keeping out those who need it.
Chronic pain functions differently for everyone, but for me, it’s a combination of Lupus, Fibromyalgia, EDS, and mysterious neurological body functions that doctors can’t/won’t pin down. Our brains are super important when it comes to chronic pain: it let’s us know, at various levels and times, what we can and can’t do in that given time. The key is to listen to your body, while also letting your brain send hints: like, if I can’t suddenly breathe in any position, then it’s time to take off my bra and usually pants. Or if my hands are shaking harder than usual, then I know not to grab or lift shit, because it’ll likely end up falling over five feet to the ground.
It is believed that a lot of neurological pain (Fibromyalgia falls under this umbrella, technically) comes from over-active nerves, as well as confuses the information of the link of pain between your brain and your body. There’s also the belief that pain can come from the brain-to-gut link (a very real thing), which usually just deposits like, stress and trauma and anxiety straight into our gut. (I’d like to think that last scientific fact is plausible for my problems, but it’s unlikely; the trauma kept coming, and my gut was fine.)
All of this is just a really long-winded way of me saying that leaving work — and continuing to not work — is not easy. It’s not the life you expect: you lose social contacts, your friends abandon you for those who are not in pain, and you often struggle with relationships. You have to ask for things you use to just buy yourself, you have to ask for help with tasks that you could do at fucking 5, and your family gets to watch you struggle with all of it without being able to control any of it themselves. They can’t make the world care more about our pain, they can’t take away the pain, they can’t give me the independence I’ve always felt I was destined for. But they help. They do.