I don’t know where to start because I’m so overwhelmed with anger. And the story is so complex. And I worry that I’m boring people with the details of my chronic pain journey.
But this all needs to be written. Not for my sake, but for yours. This post is a warning, a plea. Don’t make the same stupid mistakes I made.
I’m trying to get the story out coherently. Maybe a chronological approach will help….
I was part of this program as a teen called CTY (we called it “nerd camp”). Basically, it’s a summer camp for high-achieving students where you spend three weeks living on a college campus and taking a college-level course. For my first 3 years, I took writing-related courses (because, writer). But for my final year at this camp, I decided to try something new — something completely unfamiliar — to expand my horizons. So I took a course on bioethics.
In bioethics (the ethics of life) we discussed the ethical quandaries of cloning, genetic modification, surrogacy, abortion… and animal rights. But before we could get to any of those (fascinating!) discussions, we had to set a foundation of philosophy.
Now, if you know my story, you know that I grew up in a cultic Pentecostal church. There were lots of things I was strictly forbidden from playing around with, including-but-not-limited-to Pokemon, playing cards, and astronomy (no, that wasn’t a typo). One major thing I was NOT supposed to go near, was philosophy.
But now here I was, being exposed to philosophy—the brave, forbidden act of questioning the Universe itself. I questioned God’s existence for the first time in my 16 years of Bible-beating lunacy. After one particularly riveting class discussion, I went back to my dorm room to think. In 3 minutes flat, I became an atheist.
And shortly after that — also inspired by the bioethics course — I decided to become an ethical vegetarian.
I did not know yet that I was a cultist who was prone to extremism.
I did not know that this was a classic case of cult-hopping: scrambling to find a new set of rules to follow after leaving a cult.
And I did not know that a vegetarian diet can trigger an eating disorder (by reducing tryptophan levels in the body, which subsequently reduces serotonin levels, which leads to depression, anxiety and obsessive-compulsive behaviors).
So I was woefully unprepared when, a month into being vegetarian, my brain violently hurled me into full-fledged bulimia nervosa.
By the time I met my soon-to-be guru, Arachne, I was underweight and devastatingly malnourished. I could barely open a car door, I was so weak. Then Arachne mystically-magically (read: manipulatively) “healed” me of my bulimia.
A few months after she “healed” me, I decided that I was mentally stable enough to go vegan. So now I was abstaining from two food groups: meat, and dairy.
You know what I should have done? I should have started taking supplements by the truckload! Given the severity and time span of my eating disorder, I had severe deficiencies in all sorts of vitamins and minerals that should have been dealt with immediately.
But I did not know that yet.
So when I started getting this weird mystery-pain in my arms and back, and a routine blood test alarmed my doctor, I was referred to a rheumatologist who, with suspect eagerness, told me, “You have lupus.”
She later revoked the diagnosis due to insufficient evidence, but maintained that I had some autoimmune disorder that explained the pain. I took that as my confirmation that veganism was totally harmless, so I kept going with it.
BOOM, college. Before the summer, I had been banished from Arachne’s cult for questioning her too much. Without her, I felt desperately lost and directionless. So I cult-hopped again… into a vegan + animal rights group. (Keep in mind: I didn’t recognize my pattern of cult-hopping at the time.)
I stayed with this group for 3 years of my college career, holding various positions throughout this time (President, Vice President, Treasurer, Events Organizer). All that is to say: veganism and animal rights were very, very important to me.
Now, see, there’s this insidiously damaging mindset that seeps into your brain when you hang around vegan animal rights (AR) activists. They will do anything and everything to convince themselves, and others, that veganism is the perfect political position and lifestyle choice. They will not allow for the possibility that veganism is flawed in any way. If anyone tries to counter-argue that they can’t be vegan for health, spiritual, psychological, financial or accessibility reasons, they go into attack mode—even if you, yourself, are a vegan. Not even practicing vegans are allowed to sympathize with people who want to go vegan, but can’t.
As a result of being immersed in vegan-AR culture, I came to believe that veganism was the perfect diet. It could cure anything — heart disease, cancer, diabetes, depression… etc. And if you were still chronically ill after adopting a vegan diet, well then, it must have been your own damn fault.
So when my joint & muscle pain, and chronic fatigue, got worse and worse and worse… I blamed myself for not being organized, mindful or dedicated enough to balance my diet.
I couldn’t believe my eyes. I checked the mirror over and over again, fervently wishing that this was all a hallucination. But no amount of blinking, or changing the angle of the mirror, made it go away: My teeth were transparent, and there were little black lines running along their edges. I had only noticed this development after an excruciating period of fatigue, muscle cramping, and dry creaky joints.
An Internet search revealed that a calcium deficiency could be to blame.
But I get plenty of calcium! I thought. Dark leafy greens, tofu, fortified non-dairy milk… I put so much time and effort into balancing my diet. You mean to tell me that isn’t enough?!
Evidently it wasn’t. My teeth looked decades older than they were, and my bones felt like they could splinter if a butterfly landed on me.
I wasn’t in the best financial position at the time, so to buy a $30 bottle of vegan calcium supplements (which would only last two weeks, by the way) was a scary prospect. But I figured I’d rather take a financial hit now than lose all my teeth before my 50s. So I bought the calcium. In a matter of days, my muscles relaxed and my teeth looked more opaque.
I was thrilled — but also terrified. If I wasn’t getting enough calcium in my vegan diet alone, that meant I’d have to keep buying expensive supplements. I was already buying B-12 and Iron supplements. Add that to the expenses of getting vegan-friendly hygiene products, and most of my food at specialized (read: expensive!) markets, and I was spending way more per month than my fellow broke-college-student friends, just to maintain my ideology-based lifestyle.
If I couldn’t meet my body’s bare-minimum nutritional requirements on a vegan diet, that mean veganism wasn’t the healthiest diet; it also meant that veganism couldn’t be the “most ethical” lifestyle, because it was clearly unaffordable and unmanageable to most people I knew.
But I wasn’t read to accept that. Not yet.
So once I finished that one bottle of calcium supplements, I stopped taking them, and went right back to trying to get calcium only from food.
Age 20, 21, 22:
Ouch ouch ouch ouch ouch, everything was ouch.
My symptoms increased dramatically. By the end of my vegan lifestyle, I was so fatigued that I sometimes fell asleep standing up, on the subway. My muscles radiated with painful heat, and my joints were creaky and stiff. I was physically miserable.
I tried every possible vegan approach to quelling these symptoms, but nothing worked.
Age 23 – now
I left veganism behind and made a big scene over it. At first, I only re-introduced dairy and eggs. Over time, I started eating meat again. I went through a brief period of eating everything in sight, because oh my god, between the eating disorder and the veg*nism, I had been deprived of nourishment for seven total years. Once I was done stuffing my face with all the most junky (but delicious) crap, I found a nice middle ground. I’d say my diet now is more balanced and healthy than ever.
In the past year, my fatigue and brain fog 100% vanished. Still, the other symptoms worsened. Joint and muscle pain became a part of my everyday life — so much so that I had to wear special shoes, avoid inflammatory foods, and occasionally cancel social plans when the pain got too severe — not to mention a host of other daily precautionary measures.
Despite all my efforts, the symptoms became unmanageable. And here’s the thing about joint and muscle pain: it can be caused by so many things. Was it a food allergy? Was it depression? Anxiety? Physically manifested psychological trauma? Genetics? Was it lack of exercise? Not enough of this, or too much of that? Should I cut out caffeine? Should I wear insoles? I’m telling you, I tried EVERYTHING. I took every suggestion from every concerned friend and acquaintance. I was ready to take ANY explanation I could get. After so many trials and errors with no change in pain levels, though, I started thinking doomed thoughts. What if I’m just broken? What if I’m one of the unlucky people who has a chronic illness? What if I have to live like this for the rest of my life? What if I need knee surgery, like almost everyone on my dad’s side of the family? Maybe I should give up trying to feel better…. No, I shouldn’t give up! I still haven’t tried $600 custom insoles! Wait, no — what if I go into debt trying to feel better and it still doesn’t work?
I felt terrified of the possibilities.
Two months ago, my left knee swelled up and turned red, and stayed that way. Whether I was walking, sitting or laying down, and regardless of what shoes I wore, my knee felt like there was a knife stuck in it. The bones felt like they were rubbing together. And man, my over-all joint/muscle pain was OFF THE CHARTS.
I finally went to rheumatologist — 6 years after my first rheumatology appointment (the one where I was misdiagnosed with lupus). This doctor said I should consider reducing my gluten intake (which only reduced, like, 20% of the inflammation), taking cyclobenzaprine (which made the muscle pain vanish but made me U N B E A R A B L Y GROGGY), and taking vitamin D.
Vitamin D? Again? Every time I’d get a blood test, I always had significantly low vitamin D levels. Taking the prescribed high-dosage supplements helped a little, but made no profound or deep impact on my pain. Her suggestion annoyed me at first, to be honest.
But this time, something clicked in my brain. I remembered something I’d read a longlonglong time ago. Vitamin D deficiency does show up on blood tests, and sometimes that’s all you need to worry about — so you get the supplements and you’re good to go.
But other times, Vitamin D deficiency is also an indicator of another deficiency that doesn’t show up on blood tests…. You guessed it: a calcium deficiency.
Now I’m taking calcium supplements again, because thankfully, now I can afford to.
And after only a short period of supplementing, guess what? My pain is gone. 100%, completely, undeniably, gone.
I am absolutely convinced that if I had eaten animal products as part of my eating disorder recovery, I would not have suffered for the past 6 years with overwhelming chronic pain. I would have been able to replenish my body’s depleted nutrients, sooner and with more efficiency.
I used to say I respected vegans’ lifestyle choices. And to an extent, I still do.
But the more I ruminate on my own health journey and the consequences of that ideology-based diet, the more furious I am. I no longer “respect” that the vegan community encourages recovering ED patients to “go vegan anyway, it’ll heal you!” That recommendation is grossly irresponsible. People recovering from eating disorders need to get their full range of nutrients replenished as soon as possible, even if they “feel fine” or “look fine” or “think they can handle the demands of veganism.”
Recoverees, hear me: DO NOT UNDERESTIMATE HOW DEPLETED YOU ARE. This is not a game. Your body is precious and complex and resilient, but also incredibly fragile. And don’t let any ideologues out there tell you that you’re a bad person for feeding yourself. FUCK. THOSE. PEOPLE. I lost years off my life that I can’t get back, and I’m still making up for the damage. I missed out on events and social outings, I suffered through unnecessary hunger pangs and painful symptoms, and I spent so much money trying to prove to everyone that veganism was not an elitist lifestyle. The irony!
I stopped being vegan over a year ago, but the grief and anger are only catching up to me now. There’s a part of me that angry at myself for not disbanding sooner, though rationally I know I was conditioned to be a cultist — I can’t hold it against myself that I tried to live by my values. I truly thought I was doing The Right Thing — saving animals, saving the planet, whatever. Maybe one day I’ll forgive myself for all the losses. For the sacrifices. For what I’ve done to my body, just to prove a point.
There’s also a part of me that’s angry for going vegetarian in the first place — because, as I mentioned earlier, low tryptophan levels (which can be caused by vegetarian diets) can cause eating disordered behaviors. People think the eating disorder comes before the restrictive diet, but the opposite is often true as well. Maybe if I hadn’t gone vegetarian, this entire 8-year health fiasco could have been avoided.
I’m also angry at the vegan-AR crowd I hung around. How fucking unforgiving they were to anyone who slipped up or compromised on veganism. I am furious at how they made people feel like shit for not being able to balance their elitist, high-maintenance lifestyle. I am angryangryangry at how vegan-AR activists manipulate people into feeling shame and remorse for being human — especially when those human beings are sick and trying their best to recover. And most of all, I am angry that I was ever one of them.
I seriously wish I could write apology letters to every person I ever shamed for being non-vegan. But I had a lot of reach. I was a representative of the Animal Rights movement — I gave speeches and presentations. I held “vegangelical” events attended by hundreds. I will never know just how many people I’ve indirectly damaged with my all-or-nothing mindset.
I’m going to need a lot of time to process this revelation that my chronic pain was caused by a deficiency, which was caused by ideology.
But on a closing note (because I hate sounding so viciously negative, even when it’s justified) — I just need to say that I’m grateful to have gotten to the root of the issue. Words can’t describe what it means to me to feel pain-free, after 7 years of suffering. It took me years to get to this place where I can love myself enough to heal, despite angry masses telling me I should stay sickly.
I’m thankful to myself for embracing change.