The Raw Truth About Why I Disappeared

The last year and a half have been incredibly difficult in so many ways for so many of us. Many lost family and friends, including me. That on its own should have been enough for people to be kinder to one another, to allow space to process and grieve, to do whatever it took to get ourselves through it as intact as possible.

Instead, we simply found workarounds to help people stay "productive." Because as a society we value an adult's (and often a child's) productivity above all else. Many authors (and readers) rejoiced that being stuck at home during the pandemic meant being able to write more books! And faster! 

You all know that wasn't the case for me or, let's face it, for many others. Yes, I did write the Dragon Story in February–August 2020. It won't be published for some time yet. I also eventually realized that I really needed a break from social media, which I used predominately for the business of being an author. Newsletters went out the window, and eventually my Patreon went on pause.

Because on top of everything related to the pandemic, on top of the chronic illness I've been living with for over a decade, I got even more sick.

Below, I discuss fatphobia, eating, and weight loss in a way that may be difficult for some to read. If you would prefer not to, skip down.

In January of this year, I started experiencing some discomfort and symptoms when I ate. My body so frequently does weird things that I thought, at first, all I needed to do was eat more carefully—bland foods, chicken broth, etc. In just a few weeks I went from struggling to eat to not being able to, and struggling to take in fluids as well. So I called my GI. By the time of my appointment—an entire 5 days later—I could barely drink anything. 

Imagine knowing that every tiny sip of water you take would cause you pain. And even if you did manage to suffer through the symptoms triggered by trying to eat, it wouldn't matter because it wouldn't stay inside long enough to count.

Then imagine doctors ignoring you because, according to some chart that doesn't differentiate among individuals' needs and just slaps on a label, you're considered obese. To the medical community, that word is pretty much synonymous with: "you did this to yourself." Fatphobia is so ingrained in medicine that it has led to doctors ignoring life-threatening issues in favor of body shaming their patients (e.g., doctors telling folks to "just lose weight" (or be glad they had) when what they actually have is undiagnosed stomach cancer). Fatphobia kills, and it nearly killed me.

That first GI I saw literally told me it "didn't matter" that I couldn't eat or drink. He did, however, schedule a test I knew I needed, so I stuck it out before changing doctors, knowing how time-consuming starting over with another practitioner, and getting the requisite insurance approvals, would be. In the two weeks between that first appointment and going to the hospital for that test, I rapidly dropped weight. When I brought it up with him, he said it wouldn't worry him until I weighed 90lbs. Spoiler alert: if I ever reach 90lbs, I'll be dead.

He added that if I was "worried"—as if that was so unreasonable when one is dehydrated and unable to eat—I should just go to the ER, even though I was in the hospital with an IV, and he could have at least given me fluids right then.

Just for extra fun, in the time between that first GI visit and the procedure, I was also diagnosed with Tietze's, a condition that causes significant pain where the ribs meet the sternum, and which can last for months or more. But hey, what's some extra pain when you can't eat or drink and already have a pain disorder? 

Because I knew the chances of being dismissed in the ER were equally high as with the other doctors I had seen, I didn't go to one until I went over 24hrs without being able to drink anything (as opposed to "merely" being in a lot of pain when I did). Many of you would be astounded at how difficult it is to get fluids, much less IV nutrition, in a situation that seems so straightforward to us laymen. To give the ER doctor credit, he ran many tests and did give me fluids (the change in me as a result of the latter was literally visible, but sadly shortlived). He still couldn't find what was causing my problems and, since I wasn't in danger of dying right that second, sent me home, though he did prescribe a medication in an attempt to help.

Ultimately, I was the one to figure out what was causing my symptoms, not any of my doctors. The last GI I saw diagnosed me with functional dyspepsia and IBS—conditions* that can get pretty debilitating each on their own—then basically told me to just deal with it. Turned out, though, the symptoms I was experiencing are known, though rare, side effects to a medication I was on—that every doctor I saw knew I was taking. So all that advocating for myself, all that effort trying to get them to hear me, was basically torturing myself for nothing. Then I also had to deal with withdrawal from those meds and the months-long search for a doctor who would listen and prescribe a replacement.

*I say "conditions," but really these seem to be diagnostic catchalls for: "You have these symptoms and we have no idea why."

As of the time I'm writing this, I've lost 27% of my starting weight. I hate the fact I have to keep track, thinking about that number daily when it's dropping, nearly daily when it plateaus for a while. (See? Recovery.) I hate it even more that all the messaging I've gotten—and sometimes even continue to get—has enough of a hold on me that I have to reason my way out of that little instinct of happiness when I see it drop. Because it dropping is unequivocally bad.

In case it needs saying, losing weight at any cost is most definitely not the path to health. That's called an eating disorder for good reason, and malnutrition has plenty of serious consequences. But it also feels important to point out that starving doesn't change your body the way we expect when we think of "weight loss." Your body doesn't care about societally preferred aesthetics when it's trying to survive.  So yes, I've lost over a quarter of my body weight—and about 18% was in the space of just 2 months—but for those who can't understand just how unhealthy this kind of weight loss is, let me put it in terms we're all much more familiar with: I've only lost 2 pant sizes. I am now frail, not skinny.

For those wondering, I'm comparing the exact same pants from the exact same brand, purchased at the same time (the second one by someone else in my home). It's about as clean an experiment as one can have given how fashion brands make up sizing, and change theirs at will.

And yet, I still constantly heard from people, whether in person (outside, at a distance—stay safe!) or on video calls about how "great" I look. Yes, even people who knew what was going on, that I was literally starving, decided the right response was to compliment me on being that ill, because to them my wellbeing is less important than looking (more like) the way society says I'm "supposed" to. I guess it shouldn't have shocked me considering I've had people calling me fat, telling me the most important thing I could ever do—"for my own health," of course—is lose weight since I was a child. It still brought up emotions I will be sorting through for a long time.

Suffice it to say, this has been a physically, emotionally, and mentally grueling 9 months. Surviving it has been about much more than simply figuring out how to get nutrition into my body, which is still a work in progress. I spent months being unable to read, much less write. At the worst of it, I couldn't even follow a plot in a tv show or movie. Yes, that was as miserable as it sounds.

While I am doing better—as evidenced in part by this long post—there are still severe limitations on what I can eat. All of this has also been less than great for my CFS, making recovery a long, complicated, and unpredictable process with plenty of setbacks along the way. I still have days when I can't handle things like reading or having a conversation, though those stretches now tend to span days rather than weeks or more. Progress, however slow.

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I hope this helps you understand why I've "disappeared." There were long stretches where I felt as if I literally had: I wasn't a person; I was barely a body, just misery and pain, trying to find the energy to advocate for myself in a system that insisted on ignoring me while implying I was lying or "exaggerating."

And yes, I believe this is at least in part an issue of gender—1, 2, 3.

I am trying to resume "being an author." I guess, since I've had books published all this time, technically I never stopped. Though in a world where we have to be constantly producing more content (or at the very least spending money on ads) to "count," it certainly felt that way. 

Thankfully, I have started sporadically being able to work on my drafted stories. Soon, there will indeed be book news heading your way. 💕

For those who have read this far and may be so inclined, here is how you can help: 

• Buy my books. Read them, review them, gift them to friends, even talk about them on social media if you're so inclined. 
• Not only will this help by showing people do care about and enjoy my stories—that it's worth the effort to resume creating and publishing—but this will also remind storefront algorithms that I exist. This matters.
• Suggest your local library buy my books! They are available to libraries in both digital and print formats, but libraries do rely on patron requests to decide what to purchase.
• Consider supporting me on Patreon for behind-the-scenes access and sneak peeks. Patrons have even seen the cover for the Dragon Story!
  • Yes, this is currently paused and I post only sporadically. However, it is a priority to figure out how to resume bringing value to my supporters there, and there's plenty of available content.
  • Please note: you will be charged immediately one time, the moment you become a Patron. Following that, I will warn all Patrons before I resume monthly billing.
• If a monthly commitment isn't for you:

• Don't forget to tell me how you're doing in the comments! 💕
• Yes, I really do want to know, and yes this counts as supporting me—it's a reminder that you're there, you're listening, and you care enough to give me the time and effort it takes to read, and respond.