“When Vegans Get Sick” — [Excerpts From My Talk At Vida Vegan Con 2015]

July 15th, 2015 - filed under: The Food » Food and Health

When Vegans Get Sick 0

Back in May, I gave a seminar at Vida Vegan Con, called “Facing Failing Health As A Vegan” (subheading: “And What Our Community Should Be Doing About It”). I had really wanted to film my talk, but wasn’t able to make it happen. So, I thought I’d share my notes, and the powerpoint slides, for all of you who weren’t able to make it out to Austin. Please keep in mind that this is meant to be spoken, not read, which means it may seem a bit funny when flat on the page — so just keep that in mind, okay?

Alright, here it is:

When Vegans Get Sick

This is a topic that is very near and dear to me. And it’s something that I’ve spent a lot of time thinking about. But it seems like, for a lot of vegans — and especially for “normal” healthy vegans — people who maybe have never experienced a health crisis — it’s not something they have ever really thought about.

And maybe there’s a reason for that?

I find that in our vegan community, there is a sort of knee-jerk defensiveness that kicks in anytime someone talks about a vegan getting sick. And I sort of understand that . . . sort of.

Because we feel like we have this *thing*, and it means so much to us, and so we really want it to be well-represented! That makes sense, right?

So when we see a person saying “I got sick as a vegan,” what we maybe hear instead is “Veganism failed me.”

And we worry, I think, that what other people will hear is: “Veganism doesn’t work.”

And so, as a community, unfortunately, we tend to react rather poorly. In this sort of, “Be quiet! Shut up!” kind of way. Like, “Silence that person!”

And it’s sad. Our fear of veganism being labeled as *the problem* causes us to lash out. And we direct our anger in the wrong place.

And I think the internet makes that easier. It’s easier to lash out, from safe behind our keyboards, and also, when the person maybe doesn’t feel like a really real person.

So like I said, this is a topic that’s near and dear to me. And so I want to begin by telling my own story.

And I want to do that, partly, so that you can see that vegans who get sick are not just nameless faceless hypothetical Internet people. And they’re not just lazy, or weak-willed, or ethically lenient.

They’re people like me.

And I was a vegan who was deeply committed, and an “influencer” or whatever you want to call it, and living in Portland Oregon with every available resource at my fingertips . . . and even I got sick.

And I felt completely alone. And I had nowhere to turn. And I almost became an ex-vegan.

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So, let me tell you about my story of getting sick as a vegan.

It all started at the end of 2010. I was living in Portland Oregon with my husband. I have a degree in biology, and I have a LOT of interest in human health and nutrition. So I had done a lot of research on diet, and was eating what I thought was a very healthy diet. A vegan, minimally processed, whole foods, mostly homemade, high-raw diet.

And a healthy diet was really important to me, because I had just become a mother. My son was born in March of 2010, and I was adjusting to new motherhood. And I was really active, and I was nursing — a lot — and really, just getting into my groove of being a mama.

And then, when my son was about 4-5 months old, is when my symptoms started.

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So what were my symptoms?

Intense fatigue, and I don’t just mean like, “Oh man, I’m so tired!” But like, when I would wake up in the morning, my body actually felt like lead, and it would be difficult to get out of bed.

And I would get rashes, weird colorless raised bumps on my arms, and torso, and face.

I would get splitting headaches, and out-of-control mood swings, hot flashes and clammy skin, and also sugar cravings. Along with a bunch of other weird, sort of smaller, incidental things.

So what was going on was of course very nondescript. It was so ambiguous. But it seemed to by cyclical, and anyone who’s ever dealt with a major illness knows it often is cyclical. And so there’s this pattern, of the symptoms alleviating. And you get this sense of hope!! Like – “Oh finally, Im getting better! Finally, god, my life is going to get normal again and I’m going to feel like my old self! Finally!”

And I would get my hopes up. And I would let my guard down.

And then one day I would wake up, and that crushing fatigue would be in my body again. Like lead filling me up.

And that? Was devastating.

The roller coaster, of having my hopes raised and then smashed, over and over, and over. And over. That was so psychologically damaging.

I developed intense anxiety, and for the first time in my life, real, self-hating depression.

So of course, I sought help!

I talked to my midwife, who I was still seeing for follow-ups. Ad she sort of blew me off, actually. She said it sounded like “typical new mom stuff.”

So then I went to an M.D., and old family friend who’s a practicing doctor. He said it sounded like maybe I picked up a virus. Nothing to worry about. He basically blew me off too, even when I came back 6 months later saying – “It hasn’t gone away.”

He said, “It’s hard to adjust to motherhood. Sounds like pretty typical new mom stuff.”

And I talked to my dad. He’s a prolific doctor of Chinese Medicine. He does acupuncture and Chinese herbalism. And he told me that my Qi was weak, and that I just needed to drink some bone broth. Maybe eat some fish.

Obviously, not very helpful.

And so this went on, for months and months and for over a year, in this up and down cycle. And clearly – no one was willing to help me.

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I felt completely alone. And it wasn’t just the midwives and the doctors. I felt like I had to keep this all secret from my community.

I mean, I’m a blogger, and an author, and a “public figure” in the vegan community . . . and I felt like a damn fraud.

And so I suffered alone. And I withdrew. I stopped blogging. I was miserable. I felt betrayed by my body, I felt like a failure, and . . . I hated myself.

But luckily, in the spring of 2012, I finally reached out to a naturopath. And for the first time, someone who could help me, was actually taking me seriously.

She ordered blood tests!

And, long story short:

–> I had extremely low cholesterol, which was inhibiting my body’s ability to make hormones. Most people know that too high a cholesterol is bad, but most people don’t know there’s a lower limit as well. Obviously, vegans don’t consume cholesterol, and my body wasn’t making enough of it. Cholesterol is required by our bodies in order to make the sex hormones – estrogen, testosterone, etc. And I didn’t have enough cholesterol to make the hormones I needed. So my hormones were all out of whack. Which is partly why my symptoms were cycling.

–> And secondly, my blood tests showed markers for protein depletion. So you know how vegans are always like “Shut up about protein!” or “You don’t need to worry about protein!” or the one I keep hearing lately: “If you’re eating enough calories, you can’t not get enough protein!” . . . Well, I am here to tell you. I am a vegan who was not getting enough protein.

Okay, so getting this news – that I was suffering from low cholesterol and low protein – it felt like a punch in the stomach. I mean, it would be pretty comically ironic if it weren’t having such a devastating effect on my life.

And my naturopath was encouraging me to eat eggs. Because really, what is an egg? It is literally a packet of protein and cholesterol.

And I was desperate. At that point, I would have done almost anything to feel better.

And I have to say, I was pissed. I was so angry, and the vegan leaders, and the vegan doctors, and the vegan gurus, who had all told me that I was eating the healthiest diet on the planet. And no one warned me about this!

And now, I was faced with this . . . horrible decision.

My anger didn’t last very long. All it really took was for me to remember why I was vegan in the first place.

And it wasn’t about those leaders or those doctors or those gurus. It wasn’t even about me.

I am vegan for the animals.

So I went to my naturopath and I said “No — we need to find a vegan way to do this.” And she said okay. And we did.

She devised a plan, and I was able to raise my cholesterol, and correct my protein depletion, using entirely vegan foods.

And once we had that blood work, and knew what we were dealing with, it happened very quickly. Within just a few months, I was a different person — healthy and happy, and still vegan.

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So my story has a happy ending — but here’s the thing about my story:

I am an incredibly stubborn person. I am also the kind of person who is very comfortable with the idea of doing things my own way – of forging my own path. And I was also living in a place that gave me a lot of access, to a lot of resources.

And the thing that I’m acutely aware of is that not everyone is like that. And so this experience has given me great insight, and a lot of empathy, towards people who are sick. And even towards people who stop being vegan.

Because unfortunately, our community is not currently set up to help them.

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This is what I see a lot of in the vegan community right now.

Judgement: food choices, lifestyle choices, health. *Every* one judging.

Victim Blaming: which is essentially saying “Whatever is going wrong for you, is because of something you did. It’s your fault.”

And then I see a lot of shaming, especially between ethical vegans and dietary vegans. If you’re an ethical vegan, “You don’t care about your health” or “You’re making bad food choices” or “You’re not eating healthy enough”. But if you are vegan for your health, well then “You’re only in it for yourself” or “You don’t care about the animals” or even – “If you’re not an ethical vegan, then you’re not a real vegan at all.”

Doctoring. Everyone’s a doctor. And this is usually like, “Whatever works for me will totally work for you!” which is just like, a really narrow way of approaching the diversity of humanity and human health.

And then finally, just straight-up stigma. “You’re sick? You’re BAD.” “Go away.” “Shut up.”

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Okay, so obviously that’s a problem. But what’s the solution?

What should you do if you are sick? If you’re vegan and you develop an illness — physical, mental, you don’t know what’s going on — whatever.

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First thing – SPEAK UP! What I learned, when I finally started speaking openly about getting sick, is that there are a lot of people out there who are sick and confused.

And every single one of them feels completely alone.

As I said in my big blog post about this: “If nobody shares their stories, then everyone feels alone.” And that is not what we want!

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Seek professional help! I seriously cannot emphasize this enough.

I have a side project going with Matt Ruscigno, and we’re exploring what we call “The Ex-Vegan Phenomenon”. Essentially, we’re studying why people stop being vegan. And one of the biggest reasons, of course, is because they were having health problems.

And what’s so amazing about these stories – and so often these people are bloggers, or have somehow shared their stories online – and the vast majority of the time they are self diagnosed, and they never got blood work done!

And I know from me, from my own personal experience, getting someone to take me seriously – yeah, that was hard. But once I got my blood work done, well I had my answer!

And it was so easy after that!

So I cannot emphasize it enough. Get blood work done, and get it done with someone who is competent enough to help you analyze and understand your results. I just threw a few of my favorite vegan dietitians up there – they’re all really awesome.

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So this is a big one, and this goes along with the last one, of self-diagnosing, of not getting professional help, and of really focusing on the idea that whatever is wrong with you, no matter what it is, will be able to be fixed by tweaking your diet.

Sometimes that is true . . . and sometimes it’s not. Sometimes you really need medication. But either way, you’ll know more when you get your blood tested.

But instead, what we see over and over again – and we see this in ex-vegans a lot – is this sort of extreme dietary management that develops, usually out of a quest to regain health or feel better.

So maybe it starts with a 3-day juice cleanse, and then after that you’re like “Okay, I’m gonna eat totally pure, totally *clean*”

And then you’re like, “Okay, I’m gonna try gluten-free because I think I might be sensitive to it.” And then you’re like, “”Okay, I read that soy can like, interfere with hormones, and I know a lot of people don’t digest it well, so I’m gonna be soy-free too.” And then, all those vegan doctors are saying oil-free, so “Now I’m going low-fat/no oil!” And then – “I actually think I’m gonna cut out all grains all together, because of the phytates! They’re anti-nutrients you know! And then also, I’m not eating nightshades because they’re inflammatory.

So basically I just eat kale.”

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“And this is what my diet looks like!”

“Oh but wait . . . kale is a goitregen. It’s bad for your thyroid. Can’t eat kale anymore!

Sooooo okay, I’m gonna be a breatharian. I’m gonna be SUPER healthy!”

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Okay so obviously, this is an extreme example and i’m kind of poking fun. But seriously? I see this sort of thinking a lot.

And to be clear, I’m not saying you can’t manage your health, and even an illness, through diet. (I did!)

But what I am saying is that right now, there is a culture of restriction. And that is not necessarily the path you should be going down if you’re trying to feel better.

Especially if you haven’t had your blood tested.

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And last but not least — there is no *One True Way* to be vegan.

Veganism is not a diet. And what I mean by that is, veganism does not tell you what to eat.

It tells you what NOT to eat – animals and their secretions – but aside from that, it doesn’t give you any direction.

And that’s really important to remember. There are a lot of different ways that you can eat within a vegan diet.

And it may be true that all-raw or high-raw works for you. And it may be true that oil-free works for you, or gluten-free or soy-free or high-carb starch-based or high-protein eco-Atkins, or whatever.

The point is that there are many ways. And if one way isn’t working for you, it’s okay to try something different –> even if the vegan guru or doctor that you’re following says it’s not.

So that’s something very important to keep in mind.

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Okay, so what about what you should do if someone you know is sick?

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Basically, these are the things I would like to see our community STOP saying to and about sick vegans.

1) People who stop being vegan were never vegan to begin with.
This is something I see all the time. The implication is that if you truly commit to veganism – on a personal, ethical, and environmental level – then you could never go back. Because once you see the light, you can’t un-see it. Or something.

The implication is also that anything less than that level of commitment is not “real” veganism. And so anyone who goes back, like due to a health crisis, was just never vegan to begin with.

And that’s basically a way of saying “You. Don’t. Count.” It’s a complete erasing of the person’s experience, and even their very existence.

And, not only is that just kind of cruel, but it’s also just really un-helpful. It just doesn’t actually accomplish anything. For either party.

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2) This works for me, so it’s obviously the One True Way, so just do it and it will work for you too!
This is something I’ve touched on already, so I won’t spend too much time here. But essentially, it’s totally fine to be like “Hey friend, have you tried adding greens and protein to your smoothie? I got a real boost of energy when I started doing that.”

And that is nice! And helpful!

And its totally different from being like “ALL you have to do is go 80-10-10 raw vegan, and you’ll never be sick EVER! It’s for sure scientifically proven that if you eat 30 bananas a day, you will always maintain perfect health, DUH!”

See the difference?

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And finally, 3) Being a healthy vegan is easy! Just look at so-and-so, or whats-his-name. So if you really wanted to be vegan, you would/could.
I see this a lot with vegan athletes and vegan strongmen. Like, “Well if so-and-so can run a triatholon, I’m sure YOU can manage to get up in the morning”.

But again, everybody is different, and these sorts of comparisons simply don’t help anyone. They are not productive.

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This is how I think our vegan community should be treating vegans who are sick or stumbling in their veganism:

With empathy. A little kindness goes a long way.

With affirmation. Don’t blame.

Embracing them. Helping them feel like they won’t be ostracized or abandoned.

Listen to them. Stop talking or trying to “fix” them, and just let them tell you their story.

And finally, with a zero tolerance policy for anyone who will judge, shame, or stigmatize sick vegans.

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And continuing from there, what about newly-ex vegans? What about people who have had a health crisis, and maybe have fallen into some of these traps, and have recently gone back to eating animal product?

Well, I know part of you probably wants to be like “WHAT ARE YOU THINKING??? Noooo, here. Watch Earthlings!! Watch Forks over Knives!!! Nooooo!!”

But . . . take a deep breath. Again, we need to think about what is actually helpful.

1) Speak gently. Remember that deep down, they probably regret their decision, or at least carry a lot of guilt and shame about it. Whether or not they let you see how much they’re hurting, they’re probably really emotional about it. So be gentle.

2) Encouragement. A lot of times when I talk to people who used to be vegan, they tell me “Well I still eat a lot of vegetarian meals!” or “I still eat a lot less dairy!” And I always tell them – “Oh man, that’s so awesome! You’re still doing so much more than most people.” And I know that can be hard, but truly. The ONLY time I reach people, especially ex-vegans, is when I keep it positive.

3) And finally, be welcoming! Extend an open offer. To come over for dinner, to join you for tea, whatever. Don’t ostracize them. Make yourself available, and approachable.

And let them come around.

Okay, so what’s the bottom line here? What’s the takeaway from this whole thing?

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Vegans can get sick. Sometimes it is related to their diet, and sometimes it isn’t.

The sooner we can acknowledge that vegans are not bulletproof — that vegans are just human beings with the same set of human problems — then that’s the sooner that veganism moves one step closer to the mainstream.

♥ ♥ ♥

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  • mm1970

    Wow, this was totally amazing. Found the link from Carrie on Living. I’ve read enough blog posts from former vegans (and the awful comments about how “you’re doing it wrong” (including from Ginny Messina, by the way), that it completely turned me off!

    I have a couple of personal friends who are ex-vegan or ex-vegetarian due to health issues. Major struggles, a few years of doctor’s visits and tests and experiments, etc. Some people are able to remain vegan and some cannot, no matter what they try (one of my friends – even injections could not cure her vitamin deficiencies). The other friend (the ex-vegan) has her education in nutrition from Columbia. She doesn’t lack knowledge!

    For both, the point at which they got sick was around the age of 40, and after a couple of decades. It makes me wonder if aging changes the body’s needs. I mean, I’m sure it does (you need just as many nutrients but fewer calories, for one thing). Pretty fascinating all around, and it’s nice that someone is outright saying “be kind”.

  • Julia

    This is SUCH an important blog post! Thank you for sharing your wisdom and experience with the vegan community. An inspiration.

  • Taylor

    OMG! This article is so good….I am a sick vegan. Sadly, you explain my old thought process!! I think vegans became so extremely dogmatic and its making everyone run away from their own intuition. I kept looking outwardly for answers doing what I ‘should’ be doing for my health, and for so long I ignored my own body’s cry for help because of that. I was basically low fat vegan, and low fat raw vegan for a while. I have thyroid/adrenal issues that are seriously tough to figure out. Thank you so much for your posts! They have been so helpful for me and I resonate with you so much!!!! I wish I had you as my personal coach!!! :)

  • Susan

    On March 25, 2016, I stopped being a vegan. I threw 5 vegan years out the window. I became a vegan for the animals, not for health or diet.
    For an entire year (2015) I suffered (in silence) with extreme lethargy, fatigue, and intense sugar cravings. I also suffered night sweats – intense night sweats. I suffered while I tried to manage it with elimination diets, smoothies etc…
    Early March 2016, I finally dragged myself to the doctor – a holistic doctor — based on a referral. Not only were my hormones out of whack, but I was borderline Type 2 diabetes (and here I thought I was a “healthy” vegan). It was suggested I start eating eggs and fish. To say I was devastated by the news would be an understatement. When I left the doctor’s office, I was angry and wanted to drive my car into a wall. I would lie in wake at night listening to the voice in my head calling me a fraud and a loser. What about the animals I kept asking myself? What about the fact you are leaving your entire estate to the Farm Sanctuary in NY? What about all of the people you’ve influenced with your vegan diet? The non-vegans you’ve convinced to give up dairy? Was it all for not?
    Flash forward to March 25, 2016. March 25 was the day I started eating fish again (clams/oysters) and I felt such extreme guilt. In fact, every day, when I eat a piece of fish, I feel guilty. I feel like a fraud. And I feel like I am no longer part of a belief system that meant so much to me.
    I also took quite a tongue lashing from a vegan friend and now he barely speaks to me.
    Everyday I have to count carbs and monitor my glucose. I hate it. But you know what? I feel better. I hate to say it, but I do. I haven’t felt this good since I first became a vegan.
    Will I ever go back to eating beef/pork/poultry/dairy? NO WAY! I was a vegetarian prior to becoming a vegan so all I had to do was give up dairy.
    My goal is to figure out a way to manage my glucose on a vegan diet, but for now, I am going to continue eating fish.
    Anyway. I really appreciate this post. I wish I had seen it when I broke the news to my vegan friend that I am no longer a vegan.

  • Emma Woods Ⓥ

    Such an important post and talk Sayward, probably more so now than ever before. With so many people joining the movement, education is key, yet we seem to be moving away from it, if anything! Thank you once again for sharing.

  • April

    Thank you so incredibly much for this amazing post! There are so many points in your blog that I resonate with..mostly because even as a “healthy” vegan, I still found myself getting diagnosed with Lyme D
    isease 2 years ago. While being a vegan has helped my health tremendously, there was nothing that I could do to stop the tiny little tick that bit me. And I hated the comments from people, “but you’re so healthy!” I am so glad that you shared this because so many people can relate to this. On a side note, I am dying to know how you were able to add more cholesterol and protein in with a vegan diet. While I am vegan for the love of animals, and will never go back, I often worry about malnourishment. Thank you so much!!!