I’m staring at my computer screen, willing words to come. Over tired from having spent the last two nights out late for (fun!) work-related shenanigans, those nights had followed six really hard pain days, and now words aren’t coming easily. The desperate attempt to jumpstart my bones and brain into cooperating with me for a few more hours by taking a painkiller didn’t really help, either.
Hi. I’m Jacqueline. I write for a living, mostly about chefs and food artisans. And I’ve had Lyme disease for over 20 years now.
I rarely write professionally about how Lyme affects my life, though now and then it comes through when, for example, I’m asked to write a piece on What You Should Know About Dining Out With Allergies and write a piece called I’m a (Food) Writer With (Food) Issues to support it.
It’s not that I don’t have the interest to write about how hard and beautiful it’s been, growing up with an illness that, as a child, made it impossible for me to walk for a while; one that’s alternatively left me homebound for months at a time and been but a backup singer in my day-to-day existence at others. One that requires prescriptions and vials of herbal medicines even when I’m “healthy”. One that’s made me follow a very holistic lifestyle and an eating regime void of gluten, cow-dairy, nightshades, and a rotating list of other foods since my first diagnosis; something I only present when absolutely necessary to the hundreds of chefs I’ve worked with in the last few years of my career.
I don’t hide my illness; I’ll talk about it with anyone who asks, and never apologize or feel ashamed of it. But I don’t write about chronic illness for a few reasons.
First off, my illness has been a part of my life for so long that it’s just that–a part of my life. Just one part of the sum that is I. And, in general, I’d much rather write about other people; they’re far more interesting. Most of the time.
Secondly, because of the longevity with my illness, I’ve learned that bodies are so highly unique that there is no “right way” to do anything. If there were, those of us here with Lyme or Lupus or Chrohn’s would know how to change our situation, because what worked for one would work for all. Oh, joy and rapture, what a world that would be, right?! But that world doesn’t exist… yet. Lyme has over 300 documented symptoms, and the paths for treatment are many and varied. I have no authority to tell anyone what’s best to do with his or her body.
(Side note, don’t you love when healthy people offer up advice? Like, “Have you tried stretching?!” “No, lady, in my twenty years of an inflammatory illness I’ve never thought of stretching! You’re a genius. THANK YOU!” That’s usually what I’m thinking but I smile and thank the person instead, ‘cause I’m a wimp like that.)
But the largest reason, if I’m going to be 100% honest on this safe and supportive platform here, is because I was once burned in a writing situation badly enough that I have no stomach for combining my personal experience with my professional voice again. But it taught me a beautiful lesson.
Sum up: I wrote for a gluten-free magazine for a year. I don’t have Celiac disease, and I can indulge once in a very long while without threat to my long-term health. I usually save these rare times for really good bread or a few sips of beer in a place I’ll never be again. I am extremely disciplined with my food and, while never professing to be a spokesperson or role model, had found myself writing about gluten-free foods because I had been familiar with alternatives for so long.
One day on Twitter, I expressed excitement for sipping at a posh beer sampler a friend had ordered in a brewery on the opposite coast from where I live. I then proceeded to get bulldozed by a blogger in the gluten-free community for what she saw as advertising that I could “cheat”, which made “those who can’t feel bad.” Hurt and angry from the interaction, I wrote a piece about inclusion within our gluten-avoiding group. About how people don’t eat gluten for various illnesses and personal reasons, and how we should support each other, rather than projecting our feelings about our own personal situations on others. I had planned to put it on my own gluten-free blog , but the owner of the magazine loved it, and published it on the magazine’s site.
Some people heralded my honesty, saying it gave them comfort in their own situations. But, mostly, people were cruel. They told me I was a fake, that I should be fired from the magazine (which was hysterical, since I never made a dime writing for the tiny startup I so believed in, which ended up shuttering a few months later anyway). People started flinging accusations and insults. I tried to hold those who were supportive closer to my heart, but the lack of compassion and understanding within a community that I had known years before to be empathetic and kind shifted something in me that I still haven’t shaken.
That situation made me wary, yes, but it also made me want to hold myself even more accountable to how I relate to others in my life.
We are all beautiful, unique, struggling, glorious individuals. And when I communicate – in person or on the Internet – I try to take in the being I’m speaking with or reading about for who they are. I’m not going to project my own experiences on them, judge or offer advice like I know better, or give them any reason to think I doubt the severity of what they’re going through. These “invisible illnesses” often make the bearer doubt themselves constantly; we doubt our symptoms, our treatment, our reliance on drugs, and the affect of our action or inaction on others. We judge ourselves for not getting better. I never want to be the one to make another feel less than, or like they are not the only one who should be making choices for their lives or bodies.
Inclusion. Compassion. Support.
In keeping with my goal of “not telling anyone else what to do”, all I can say to wrap this up is that I hope our community – the one filled with people suffering the silence, not knowing how to speak on the hardship that is living with a chronic illness, and those who live alongside us – will hold each other carefully, gently. That we listen without judgment. That we offer advice only when asked. That we let each other really express our struggles and the intimacy that is living in a body so unique, so needy, and so its own entity, so that we can get stronger and calmer as individuals, despite where these bodies are in any given moment.
I very much had that when I met Allie and Erica recently, and I have full confidence and thanks in that Allie’s book and this site will continue to be a safe and loving space for us to share. I look forward to sharing some inflammation-fighting recipes here with them, and learning more about you all, too.
Thank you so much for reading. In love, peace and good health,