Two years ago, I was in the midst of health hell. I was hurting and exhausted, barely able to move my joints or complete simple tasks, like brushing my teeth, without experiencing pain. I felt like my world was crashing around me and I couldn’t hold up the pieces long enough to figure out what was wrong. My primary care physician (and friends) kept saying it was normal, that it came with turning 30, that I was over-stressed. But it didn’t make sense. It didn’t feel normal.
I was overwhelmed and scared–my body wasn’t letting me function. Google didn’t help.
And then I made the decision to see a rheumatologist for some answers–best decision I ever made in regards to my health. My first appointment was on November 12, 2012. I remember sitting in the waiting room, aching and apprehensive because I didn’t know if she was going to take me seriously or not. I remember when she walked in and listened to me, really listened, and then said, “We’re going to figure out what’s going on.” It’s as if by just saying that, she validated what I knew in my heart. I wasn’t a hypochondriac or imagining things. She had her suspicions, but she was meticulous. I had vial after vial of blood taken, I made appointments with specialists. I saw so many -ologists in those following months I lost count.
And I wrote along the way. Many of my blog posts during that time can be found here. I wrote poems, blogs, and essays. I poured out my fear and frustration into words. It’s been one of the darkest moments of my life, and perhaps it’s because it came on the heels of my dad’s death. On the good days, I could breathe, get through the day. On the worst days, I felt like the sky was falling on my shoulders, crushing me against the floor. I felt as if I were failing at everything in my personal and professional worlds.
I was lucky. I only had to wait a couple of months for the first diagnosis–fibromyalgia–and another couple for the second–undifferentiated connective tissue disease. On support boards online, the overwhelming majority of stories showed how long many can stay caught in that black net of not-knowing. With a diagnosis comes a plan of attack, and hope. Medicines, lifestyle changes, education.
Knowing was half-the battle.
One of the hardest parts (the hardest, by far, was figuring out what the hell was wrong with me) of this journey, though, came next: changing my habits. It’s not easy, and I still don’t have a complete hang of it. It’s hard to go against decades of upbringing. But slowly, I started eating healthier, listening to my body, learning to say “No.” I went from trying to do it all to knowing when I had to stop. This part was filled with hope and grief. There was reaction to medications and readjustments, trying to find the right combination of medicine and lifestyle change that was right for me. There were many tears. And there was much, much writing.
I always knew writing was a release for me, but I didn’t realize just how much I needed writing to get me through this dark time. It wasn’t a matter of just recording how I was feeling, though that was a big part of it. But it resulted in creation and that process, it turns out, is just what my body needed to heal. In creating words and worlds and characters, in exploring this story, I get release. Stress drops, my body relaxes. I rest and regenerate and heal.
Writing is healing on so many levels.
Now, two years later as I write this, I’m in the middle of a flare. It’s part of this journey. I get it now. Flares are cyclical and will recur during periods of high-stress. In my line of work, I know when I can expect them, so I make amends in my schedule to manage them. But the flares are less intense. The medicines work and for the most part, I am so, so much better.
And I’ll keep writing. Not just because I love it or because I have a story to tell or because it’s a part of me. Those are certainly all reasons why I write. But high above those reasons, is the undeniable fact that I write because it heals me.
Alexandra Alessandri 