For a long time, I identified as a writer. It was the whole of who I was, what I was, and what I wanted to do with my life. It wasn’t until my mid-30’s when I was diagnosed with severe, advancing Rheumatoid Arthritis that it came to an end. Writing became a frustrating struggle against medication-induced anxiety, confusion, and memory loss. Just trying to find enough focus to be coherent through the pain I experience on a daily basis was a battle. Eventually, I came to the realization that I could no longer be a writer. I could still write, sure, but it would never again be the identity I lived by.
It’s been strange, letting go of that part of myself, but in a way I think it’s been liberating. I can write when I can, but I can draw, nerd out about my various fandoms, and generally be myself without having to pigeon-hole myself into a niche I feel I can no longer fill. I think, out of everything that may come out of this blog in the future, that’s what I want to impress upon most to my readers — especially those suffering from debilitating chronic conditions like RA.
Change is good! We’re told not to give up, we’re told not to let our disease “defeat” us, we’re told all this happy-go-lucky mind-over-matter malarkey that’s better suited to motivational posters than the Reality of what we’re facing. Changing to adapt to what your disease does to you is an intensely personal decision that only you and your immediate family, spouse, or caregiver should have any say in, because it can and will affect all of you. Friends, extended family, co-workers — none of them matter, because they don’t have to face the daily reality of your condition(s). At best, they see the glossed-over, Brave Face Edition of it because none of us likes to put our pain on display.
Don’t let hyper-encouragement discourage you from making the best decisions for you, your life, and your disease. I think I’m happier now than I have been in a long time, because I finally stopped listening to what everyone else kept telling me I should be feeling or how I should be coping or what I should be doing. I simply did what was best for me.
The decision to change wasn’t easy. There were a lot of tears and, even now, I’m struggling to figure out who I really am in the wake of it all. I’ll get there, though, and when I do, nothing in the ‘verse will stop me.