Chronic Pain and Diet Culture Make a Terrible Team

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Living With Chronic Pain as a Recovered Bulimic

When I was nineteen and in community college in Eugene, Oregon, I worked for an in-home care company. I spent a lot of time caring for people in their homes. I was paid very little (in home carers are not paid even close to what they are worth), but I enjoyed the work. I’ve always liked helping people, and as a writer it felt like a privilege to be inside people’s lives and homes, not because I was gathering information about them, but because their lives helped to define my own in the differences.

I worked with a single older woman for a while who must have been about the age I am now. She had fibromyalgia, a disease that was, for a long time, thought to be more psychological than physical (probably because it mostly affected women). She was in a lot of pain. For some reason, I’ve always remembered her, and how difficult it was for her to do things around the house, how she seemed ashamed of its difficulty, always wanting to help me do my job.

I get that now.

I don’t have fibromyalgia, and I don’t have an in-home worker, but last September I was diagnosed with rheumatoid arthritis. For years I have been telling doctors I was tired. Too tired. So tired that on some days, no matter how much rest I’d had, I could barely manage to peel myself out of bed. Strange symptoms mounted, but after leaving my MFA program I didn’t have health insurance, and I didn’t see a doctor again until I took my full-time nanny job in Seattle. Then, autumn of 2020, I told my doctor about the mysterious pain in my hips and pelvis; the strange “flares” I’d started getting, where my entire body ached/ The sensation reminded me of when I used to drink, the billowing warmth of intoxicant spreading through me, numbing me; except its opposite sensation. Instead of numbness it was heightened sensation. Pressure. Aching. And the fatigue? Worse than ever. So bad that I sometimes felt I may fall asleep while driving, or walking.

My doctor prescribed me antidepressants. It wasn’t until last autumn, when she finally ordered blood tests, that we realized my markers for rheumatoid arthritis were all off the charts. By then I was in much more pain. Since then I’ve seen a rheumatologist whose bedside manner is reminiscent of an ATM machine. I put my card in, he reads it and spits out a prescription based on what the insurance company tells him is appropriate. I’ve taken every single DMARD on the market. Finally, after all of them had negative side effect, my doctor prescribed me Humira. Then, I had to jump through a bunch of hoops to get the actual medication, finding out through trial and error that the prescription needed to be sent to a specialty pharmacy and shipped to me from across the country, because there was no local pharmacy my insurance approved. That was stressful and scary. On top of the stress and fear, I was in mounting pain. A vice squeezed me hips and pelvis; my hands and fingers ached.

I took my first dose of Humira, an injectable medication, three weeks ago, and am now waiting for the next dose to arrive in the mail, a week late. Humira blocks a specific cytokine in the body responsible for severe inflammation. Tonight I’ll take a dose of methotrexate, too, another DMARD, because, finally, I do not give a fuck.

When I was first prescribed methotrexate, the medication all doctors must try first as required by the insurance companies (because it is the cheapest, but also very effective as a first line drug), I was terrified to take it. An immunosuppressant? A drug used in chemotherapy? Very scary. Now I would take an entire bottle if someone told me it would stop my pain. I cannot sleep, I cannot stay in one position for more than fifteen minutes, it hurts to walk, it hurts to bend down. Everything hurts. I would fucking do anything.

I can’t help but think of all those years I wasn’t in physical pain, and how I took them for granted. I didn’t even know I should be grateful. Would my gratitude have changed what is happening now? Probably not.

I am very hopeful that these next two doses of Humira will start working. The goal with RA is not to cure it (though if there were a cure that would be nice). The goal is to suppress the immune system effectively enough that it stops attacking the joints, and to hopefully find a maintenance dose of medication that will keep things in check. That’s called remission.

What Does This Have to do With Bulimia?

You know that thing in our society called diet culture? Diet culture is often thought of as the pervasive belief that all of us need to be on a diet, making sure we don’t get fat, keeping ourselves in smaller bodies. It can lead to eating disorders and death and Christy Harrison, the host of the Food Psych Podcast, calls it the life thief. I agree with this assessment. I struggled with bulimia for my entire adult and adolescent life, up until about a year ago (though I have been recovering for about eleven years, not in severe disorder as I had been from age 32 and younger).

There’s another side to diet culture, which is this insidious belief that we can control what happens to us with our diets. When I was first diagnosed with RA I found several groups on Facebook and, upon joining, noticed that the primary modes of engagement were about diet and medication. More than anything, people posted about certain diets (paleo, vegan, AIP) “curing” their RA or relieving symptoms.

As a recovered bulimic I had, for a long time, bought into the idea of healing the body with food. I’ve tried every diet out there, a lot of the time claiming it was for my health when my primary goal was weight loss. Throughout my MFA at Syracuse I was paleo and gluten-free, and obsessive about my food. My bulimia was much better, but I was orthorexic (defined as having an unhealthy focus on eating healthy). I was also obsessively exercising, to the point of injuring my knee (which had already been injured in a climbing accident) and needing a second knee surgery. I also lost weight and “looked good” and appeared very healthy and strong. But if I went a day without exercising I started to feel like I was doing something wrong.

How did I heal that? I stopped exercising intentionally altogether. I stopped going to the gym, stopped pushing myself. And it felt better. I felt healthier. I walked more, went outside more, and moved my body in ways that felt good rather than left me in pain.

That is a story for another time.

Since my diagnosis, I have been trying to find out why I got RA. A couple months ago I went on a full elimination diet, cutting out all foods that could be considered allergens from my diet. And you know what? I didn’t feel significantly better. I didn’t feel better at all. On top of not feeling better, I also felt that familiar deprived, stressed-out vibe from when I was in my eating disorder. When it was time to add foods back in and test to see how they felt, I ended up eating everything, because it was way too stressful to be so focused on how food was making me feel.

It is impossible for any of us to make ourselves a controlled study.

During my elimination, I had switched medications several times, added and subtracted prednisone, a powerful steroid, and experienced a very stressful loss of employment. How, in the midst of all that, could I attribute any change, negative or positive, to what I was eating?

I started thinking more deeply about my diet on a daily basis. I eat things I like, which includes lots of fruits and vegetables and whole foods and also sometimes ice cream and takeout. My natural diet, the diet I gravitate towards and that makes me feel good, doesn’t include very many processed foods at all.

When I think about the ways I’ve felt personally responsible for my autoimmune disorder, I remember the woman with fibromyalgia who always wanted to help me do the things around her house she needed respite from. Who felt guilty for being sick, for not being able to do those tasks.

I did not give myself rheumatoid arthritis, and it’s delusional on my part to think that diet is the key to going into remission.

How can diet be the key when there are other variables that have a marked, observable effect on my symptoms? For instance, if I don’t get outside and move my body every day, my pain worsens. If I don’t stretch, my pain worsens. If I don’t get enough sleep and take care of myself and take time to write in my journal and do some yoga nidra and meditation, my pain worsens.

We live in a society that barrages us with images and words and media that tells us we are not good enough. We engage with social media that promotes aggression and feelings of scarcity and fear.

Diet cannot help with that. As far as I am concerned, beyond removing super processed foods from my everyday diet (but not from my diet completely because deprivation is stressful!), nothing in my diet needs to change. Just writing those words, I can feel my stress levels decrease.

Don’t get me wrong. There are some foods that aren’t good for my RA. M & M’s. Straight up candy. Cheetos. That’s okay. But also, if I eat some Cheetos (yum) nothing is going to change, really. If I eat them every day for breakfast? Then maybe things will get worse. But once in a while? Nope.

A Social Media Hiatus

In the interest of my mental health, my stress levels, and my well being, I’m going on another social media hiatus. For those of you who haven’t been here since the beginning, this newsletter was started in the midst of a hiatus.

I’m looking forward to it. I feel annoyed and aggressive on Twitter. I am bombarded with diet culture shit on Facebook. And Instagram? I haven’t been on there in a week already. It’s not good for me right now.

I am hoping that, during this hiatus, I can get a clearer idea of where I want to take Socially Awkward. I want to keep this personal aspect, incorporate more short stories and reading, some music. But I don’t know, still, what it’s supposed to be. Maybe the not knowing is part of what it’s supposed to be.

If you could share below what you value about Socially Awkward and let me know if there’s anything you’d like to see more of, I’d really appreciate that!

SUBSTACK HAS AN APP! DOWNLOAD IT HERE TO READ SOCIALLY AWKWARD ON YOUR PHONE OR TABLET.

What I’m Watching and Reading and Doing:

• Recently I read Milk Fed and I’m currently reading Who They Was.

• I watched the entire Evan Rachael Wood documentary about her experiences with Marilyn Manson, and it was beautiful and heartbreaking and sad and sometimes felt a little heavy-handed which feels like a weird thing to say about a documentary about survivors, but it’s true for me. I would imagine that the director wanted to make sure the viewers got the point. And I certainly did. As a fellow survivor, it’s very clear to me that Manson is someone who has abused many women. I hope he reaps his karma, and Evan is able to heal.

• I’m reading a book about Indigenous Americans and the national forest system (research for my book) and it makes me really fucking sad.

• My editor gave me her feedback which means that next week I set out on the wild range of revisions, which means I need to give myself an entire weekend of rest, which means I have a lot of work to do today and tomorrow…

• I quit my nanny job, which means I am actually a full-time writer, which is bonkers to me!!

What have you been doing lately? Reading? Writing? Watching? Tell me in the comments.