On Social Stigma and Mast Cells

I have been prettying up the blog, and making a facebook page the past couple days. But I am also struggling with being a bit more reactive. I’ve been itchy, rashy, neurologically glitchy, achy, and on the very early edge of migraine. It could be any number of things that triggered my mast cells to start leaking mediators (the chemicals MC’s contain that signal your immune system to activate). Maybe I was doing too much because I was feeling so good at the beginning for the week? Or, maybe it was the new PT exercises? Or, the change in my acetaminophen brand (more/different artificial colors)? Maybe the fact that I have gotten more time in on the recumbent bike this week than I have previously? Or maybe, if I’m being really honest, it might be publishing this blog. Truth be told, it’s probably all of the above overflowing my histamine bucket. But in this post I want to explore how weight-based social stigma and oppression impact Fat Zebra health.

Why would publishing a blog trigger my mast cells? First of all, I continue to be amazed at the things that can trigger mast cell activation! My weirdest ever trigger was the sun (seriously, WTF?!). Luckily that seems to only happen when I’m in a really reactive flare. But this blog? Really? Well, stress is a known MCAS trigger. But writing this blog isn’t that stressful. I’m on sabbatical, on my own timeline, no one is breathing down my neck. I can nap when I want to. So, it’s not that kind of stress I’m talking about, but the stress of social stigma. This is a particularly difficult kind of social stress that all people with chronic illness and disabilities face, but Fat Zebras get our own special kind of social stigma–weight bias and oppression.

Research shows that the stress of social stigma, particularly in relation to social inequality, is terrible for our health. And Fat Zebras are subject to weight bias everywhere we go. Not just in the doctors office, but at our jobs, at school, in grocery stores and restaurants, at the gym, on the street and … online. EVERYwhere. In fact some researchers argue that much of what we think are the negative effects of “obesity” may actually be due to weight stigma.

Fat Zebras have to deal with weight stigma and its intersections with disability, gender, race, and other socially defined identities. For example, many fat people with disabilities report verbal abuse when using disabled parking spots. This is a new fear for me. I recently got a handicap placard to use, particularly in the winter when I am at risk of subluxation due to ice and snow. Of course, it is also helpful for saving spoons, too. But I do worry that onlookers will mistreat me because I don’t “look” disabled … just fat.

Another place Fat Zebras have to deal with weight oppression is during air travel. For me, airplane seats are hard to get into without twisting in dangerous ways for my EDS knees. I always worry about subluxation on the plane. But I also feel pressure to move quickly, which doesn’t leave time to be careful. But, these are Zebra stresses. Fat Zebra stresses look a little different. For example, a few years ago, when sitting in an aisle seat with the arm rest up, a flight attendant intentionally smashed the arm wrest down onto my leg causing bruising and pain rather than just asking me politely to put it down for take off. Lots of fat people experience assaults like this, but because of my EDS and MCAS I bruise more easily and pain can be a trigger for an acute attack due to what’s know as central sensitization.

That same year, on a flight to Hawaii, I was trapped for six hours next to a woman who has having nothing short of a full-blown meltdown about being seated next to a fat person (me). I am privileged by skin tone and gender expression, but I knew without those privileges the situation could have become violent as we have seen in recent years. The flight attendant had my back, brought me free drinks, and was kind. Despite that kindness, it was an inescapable shock which lead to anxiety about flying for me. Again, my privilege rescues me. I got therapy and these days I pay to fly first class tickets. It doesn’t guarantee I won’t be harassed or physically assaulted again, but it does help reduce the risk a bit. And the roomier seats make it a little easier on my joints getting in and out of the seats. Still EVERY time I fly, I struggle with anxiety about how I will be treated. I tend to internalize that stress, so sometimes I’m not even aware that I’m near panic until someone else, like my dear partner, points it out.

Another space in which Fat Zebras experience the stress of social stigma is online. A few years ago, after I published a couple of op-eds in online media, I received harassing emails and phone calls. I didn’t bother to read the comment sections! Sadly, just about any woman or non-binary person with a public online presence can count on harassment. The emails I received were simultaneously sexist, racist, and fatphobic. I even got one message that engaged with the main point of my article in a positive way to lure me into reading to the end where the author buried a “You’re fat.”

I KNEW that terrible stuff happens online. But knowing it intellectually and coping with it are two different things. I try to be resilient, but the reality is there is only so much abuse a person can take. And, I have received a LOT of weight-based abuse over the course of my forty-years as a fat child and a fat adult. Opening myself up to online abuse is not something I really want to take on.

But that fear of weight-based (and gender-, race-, and sexuality-based) oppression isn’t limited to strangers on the open internet. Even in the semi-private space of my FaceBook feed, I find myself apprehensive about posting weight-related articles. A while ago I hid friends who routinely engage in diet talk online to help me with my own recovery from diet culture. But I know they are still there. I don’t like that this is true, but I do worry what they will say or think. However, this past year as I’ve been dealing with health challenges, and the results of decades of medical bias and neglect, I’ve started to care less and less. Something has got to change.

This kind of constant background worry and stress related to oppression is documented to be toxic to our health. We don’t even have to actually experience the bias to experience stress about the bias. The threat of bias is enough to raise our cortisol (stress hormone) levels.

So, posting this blog, though I am immensely excited about it, carries some social risk for me. Facing the possibility of weight bias from my friends and family is likely increasing my stress and contributing to mast cell activation in my body.

This is what it means to be a Fat Zebra. We deal with our illness. And on top of that, we must manage the way our illness is amplified by toxic stigmas that cut to the core of who we are and how we encounter the world. It’s bad enough to be sick. It is worse to be sick in a cultural environment that hates you for who you are.

It is not only fat stigma that has negative effects on health. Extensive research shows ways that other forms of oppression such as racism, heterosexism, cis-sexism, lead to elevated stress and poor long-term health. Fat Zebras with MCAS just show the effects of stress more immediately than non-zebras. As many in the EDS community like to say, we are just the proverbial canaries in the coal mine.

But if you are a Fat Zebra, there is an silver lining. Research suggests that the health impacts of oppression are magnified when we internalize (come to believe it to be true) bias against us. Folks who externalize bias, may not experience stigma-related health disparities to the same extent. So, work on learning to see how you might have internalized oppressions. Educating yourself is a great start. But, working with a good therapist can help too!

2 Replies to “On Social Stigma and Mast Cells”

  1. Sara – wow! I feel like I’ve been the black sheep with many of those that I’ve met with EDS…. they’re ALL skinny! I’m just the opposite – and I know that it directly impacted me finally being able to get a correct diagnosis. I was diagnosed in August 2018 – right before my 40th birthday. I’ve seen countless specialists. Way to many have focused on my weight (or mental health) being my primary issue – completely disregarding other, documentable problems.

    So, I feel like I’ve met a member of my special dazzle – another fat zebra! I also write a blog – started just last month.

    Keep sparkling Sara!

    1. Hi Kim, yes we are two of a kind aren’t we, diagnosed the same month at very close to the same age! I’ll follow along at your blog. Be well!

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