I’ve moved! Here’s how to find my new blog.

I have stopped using this blog and moved somewhere else!  Come visit me on my new blog! My reasons for moving…  I started elusive healing about 2 years ago as a way to begin processing all the big changes in my life wrought by my illness.  This has been an amazingly helpful space for processing feelings and figuring my shit out, being raw and angry and emotional, and it has been a necessary and productive and comforting space in which to cope with the liminality of pre-diagnosis (oops my anthropology is showing).

However: 1) it has the word ‘healing’ in the title; and 2) It is full of swear words.

Swear words are an excellent form of expression, and I wholly support using them. But… my graduate funding runs out as of April 2016 and I am trying to transition into finding paid writing jobs.  In order to do that, I probably ought to have a slightly more professional looking website, so that’s reason number 2.

Reason number 1 is more feelingsy: I have come to kind of loath having ‘healing’ in the domain name/url/title of this blog. I feel like striving towards ‘healing’ is completely at odds with the necessity of coming to terms with the permanent nature of chronic illness, and, while it’s true that I can (partially) manage my symptoms through diet and medications, it is also true that I will never be ‘healed’.  Chronic illness is forever. It’s important for me to come to terms with that and stop striving for something I will always inevitably fail to achieve. So new blog. New url.

My new blog will still be full of being vulnerable on the internet and calling out ableist bullshit, except I plan to look like a fancy qualified writer/academic (but not boring) while I do it.

The new blog will be updated weekly (ish). Some things I plan to write about:

  • Resources for Spoonies & resources for friends & family; 
  • Chronic/invisible illness & relationships: Significant others, friendships, new frictions; the burden of explanation, accessible fun times with your chronically ill friend, alternatives to small talk
  • Chronic illness & ableism, microaggressions
  • Chronic illness & critical reflections on activism/organizing/anarchism/feminism, e.g. Ableism, privilege & discourses around ‘dropping out’, as well as feminism, self sufficiency, dependency, and internalized ableism
  • Teaching & Chronic illness: tips for TAs, lectures & studies
  • Book reviews/Spoonie Book Club (r/t representations of chronic illness in literature)
  • Ask the Chronically Ill Anthropologist (Send me your questions!)
  • Reflections on the liminal space of pre-diagnosis
  • Chronic Illness, Disability and Intersectional Oppressions: Sexism, class, addictions, effects of childhood trauma on health; Chronic illness and racism, heteronormativity, gender (non-binary) – I will be sharing links to other bloggers, videos and resources, and in the months to come I hope to expand to include guest posts and/or interviews

Thanks as always for reading, and hope you like the new writings!

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Spoonie Film Club/Movie Night

Spoonie film club is a weekly virtual get together for spoonies, where we watch movies and tv shows together online through rabb.it.  Some of the movies feature complex representations of illness and disability, and some movies and are simply fun to watch with new spoonie friends because magic and escapism.  The aim in general is to connect with other spoonies, make friends, support each other, and also sometimes find movies or tv shows that enable us to think through our illness and struggles and triumphs with one another. There is also a chat bar alongside the view screen so that we can message each other while we watch.

movie night banner

Fabulous banner courtesy of @painandcats

More information including FAQ & how to join Spoonie Film Club can be found here.

Future updates & related posts including new schedules can be found here.

 

***

Update: My username has changed to colitiscoping on rabb.it — that’s how you can find me if you haven’t done so already 

 

 

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Chronic Illness & Friendships– Some closing thoughts

Epilogue/Afterward 

I really appreciate the people who took the time to read what I wrote about chronic illness & friendships and share their thoughts and feelings with me. I’ve learned so much from these conversations. In addition to reassuring me that I have still have friends who love me, our conversations have also helped me to figure out my feelings with a little more clarity, as well as proactive steps to minimize the isolation that seems to be a too common side effect of chronic illness.

I know it’s not unusual for friends to grow apart throughout our lives as we change, and that the last 6-7 years have been a time of growth and change beyond/in addition to illness.  But there’s also something that’s particular to the ways friendships/relationships change and fade with chronic illness. After writing the above emotional/feelingsy thing, I spent a lot of time reading other people’s stories, their experiences with illnesses and friend loss.  If you google “chronic illness friendships”, you’ll find that people of all age groups with any chronic illness involving low “spoons” go through something similar (“friendship fallout”).  I don’t think it’s helpful to minimize this. I think it’s important to validate sick peoples experiences and feelings about this process. It’s part of what reshapes our world and how we exist within it.  Our relationships are important. How they change is important. What we feel when we are figuring out these changes and how to exist now in a world that is simultaneously the same yet entirely different, is important. Our experiences of loss and grief are important, and they deserve validation.

I think, in addition to the fact that sick people often become flakey and cranky, and full of difficult emotions that put demands on their(our) support networks, friend loss also occurs partly because so many friendships just kind of happen and evolve through repeated interaction without needing much conscious effort.  You see each other, you remember that person exists and that you’re glad they’re in your life, you make more plans.  The repeated interaction part is what seems to stop when people get sick and stay sick and fade from previous important facets of their (our) lives, unless there’s a conscious, deliberate, and mutual effort.  There’s no longer room to leave things to chance encounters and spontaneity.  So I need to be better at reaching out, and I need to know which of the peoples are willing to reach back and take turns supporting each other.

From what I’ve read of other peoples’ experiences, it also seems that sick people deliberately end or fade from friendships when there are chronic illness/ableist microaggressions (e.g. ‘You don’t look sick’, ‘you’re not that sick’, ‘I wish I could spend all day in my pyjamas’, ‘are you playing the illness/mental health “card” to get out of x obligation again?’ ‘you never want to do fun [spoon intensive] things anymore’). There aren’t enough spoons for sustaining relationships with people who haven’t unpacked/aren’t trying to unpack chronic illness/ableist microaggressions.

I’m using so many spoons to prioritize these difficult conversations because I care. So much.  I want clarity around this process, and I want to skip over some of the ambiguity and wondering. I want to know which of the peoples want to find ways to have friendships with the me I am now (as opposed to the me that past me might otherwise have logically evolved into), and I want to know when it’s time to let go of people who don’t want to actively prioritize friendships that are no longer easy or convenient or full of spontaneity and [spoon intensive] adventures.

I’m going to brainstorm ways to stay connected while low on spoons, and I’m going to be better about reaching out, sharing what I’m feeling, and showing the people I love that they are important to me. I think this post might also help us find ways to be consistent with maintaining friendships now that it requires conscious effort. Maybe simple things like messaging each other hearts every now and again would be enough for now. It’s easy to feel like the world has forgotten us when we get sick, and tiny reminders that we aren’t forgotten are sometimes all we need.

p.s. I also have a spoonie themed tumblr page that I use more than this blog—if you want more insights on coping, spoonie memes or cat photos, you can find me at: http://catladycolitiscoping.tumblr.com/

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Accidental Crying & Chronic Illness Feels; Also Reflections on Friendship

This week was not at all what I expected.  On Monday morning I was cautiously optimistic about phd progress as well as closure regarding unsettled/unsettling big life things. Instead, this week I was blindsided by mystery tears and falling apart, and then confronted by the full realization that I am not, in fact, coping as beautifully as I thought I was with All The Hard Things.  Apparently I am actually a ball of tightly wound barely-keeping-it-together overwhelmedness and unprocessed feels about the multitude of ways chronic illness has reshaped my life (against my will). Who knew?

Here is my attempt to name some of those tangled-up noisy persistent feels that I have, up to this point (perhaps as a totally valid coping mechanism) kept mostly squashed down because I have no way of dealing with them.

1. The impact of chronic illness on friendships

I’ve tried to articulate this before, but it’s hard to find the right words for a problem that has no solution and also just makes everybody feel bad.  I wonder if I should even talk about these things out loud at all.

But no words leads to misinterpretations as well as a profound sense of alienation and isolation when almost all of my interactions awkwardly sit at surface level and none of the big life-rearranging truths are spoken, so maybe it’s better to say something rather than nothing. So here are my awkward truths:

I (almost always) feel an active aversion to going out and doing stuff with friends, even when I have enough ‘spoons’ (a metaphor for the finite and carefully measured and monitored energy and hence capabilities that come with chronic illness).  This is because:

Being around people who have All The Energy to do All The Fun Things (read: all the fun things I used to do & imagined I would still be doing) makes me feel sad and confused and resentful, and I don’t know how to deal with those overwhelming tangled-up feelings.

Sometimes I feel more isolated being around Friends With Unlimited Spoons than I do at home, alone with my cats.

I don’t really know how to relate to Friends From Before Illness anymore, now that my life has changed.  It feels a bit weird and awkward. Do we still have things in common? Sometimes I am not sure anymore.  Would we be friends, now, if we were meeting for the first time? And you didn’t know the pre-illness version of me?

All of 2015 I was too fatigued to knit, crochet or even sew a thing, so I even have trouble connecting with People Who Are Not Sick about non-energetic creative hobbies these days.  Some evenings I am too fatigued for the least energy intensive activities possible, like colouring and netflix.

Friend: “I am still doing this fun thing you can no longer do. Also we are putting on a show.  You should come!”

Me: … (am I making the right face? What is the face for this?)

Friend: “Also I got this new job that I am excited about. And I have these fun plans for the future. And also am doing all of these creative things that are very rewarding and validating. Kind of like the things we used to do together.”

Me: …. (Is this the right face for ‘glad for you’. I hope I am making the right face)

[Conversation dialogue inspired by Hyperbole and a Half--Adventures in Depression Part Two]

[Sample conversation dialogue above inspired by Hyperbole and a Half–Adventures in Depression Part Two]

What I contribute to our conversations: “Yes, I am still sick.”  “Nope finally having a diagnosis does not mean it will be cured, but at least people no longer assume I’m a hysterical hypochondriac with a bizarre eating disorder, so that’s good.” and “Nope, no new stories to tell, I still sleep a lot.” Lastly, “Cats are great. I love cats…”  This repertoire quickly becomes old with repeated interactions.

Additional depth is often more awkward: “Yes these family members are still suicidal and addicted to various things but they’re no longer talking to me, so… I’m just trying not to think about it…” Or, “Oh, the future?  I have no idea what that will be like now that I am sick and it’s terrifying” (see below).

Now that I am sick, I keenly feel (or imagine) your a) disinterest, if we have already covered this conversational ground in previous interactions; or b) awkwardness, if I try to communicate about almost anything that is happening in my life, because, for some inexplicable reason, they are almost all Big Heavy Overwhelming Things that don’t neatly fit into light social interactions. Or cats, which we’ve already talked about.  Also, I don’t really know how to articulate a lot of what I’m feeling to myself, let alone to you, so often I am having trouble interacting with genuine depth.

How do friendships work between people who become sick (forever) and not-sick people from the time before sickness happened? Is this a thing other sick people have trouble with? Because it’s totally fucking with my head, and I have no idea what to do about it. Is sharing these feelings with you the right answer?  Or will it have the opposite effect and further alienate you? I think being honest about feelings is generally good though.  Or maybe it isn’t. Maybe there are social codes of politeness that require dishonesty. I don’t actually know. Sometimes I am confused about everything, and this is one of those times.

Avoiding you is clearly not the right answer. Regardless, though, it seems like we inevitably grow apart. You still have your life and all your fun things, and also your job and other friends, so maybe you don’t really notice much, I am not sure.  I am at home watching star trek with my orange cat.  I notice.

I wonder, “Where have all the people gone?” “Did I push the people away?” “Am I still friends with the people?” “Oh well, I guess I don’t have energy for people today anyway.”

Friendships are harder when you no longer have things in common, and it’s really fucking hard to come to terms with the reasons why you no longer have things in common (illness, forever), and being together often reminds you of your newish and imposed limitations, and you are angry and sad and aggrieved about said limitations, and also, you are exhausted, All. The. Time. And possibly in pain. There are all these cascades of overwhelming feelings that are impossible to untangle and even harder to articulate, but they are always not far below the surface.

Do other ’spoonies’ feel these things too, or is it just me?  The two other people I know with somewhat similar illnesses always seem to be coping so much better than me. And I begin to wonder whether these feels say something about my character and poor coping skills, and whether the resentment that I sometimes feel means that I am a bad person.

And then there is grief for the friendships that fade as you lose yourself to illness and become somebody different.

Except oftentimes it’s not even very conclusive, just a gradual drifting or ghosting, without the finality and clear articulation of ending that would allow grief and moving on.

I still find myself wondering sometimes how to fix these things, or at least halt any further dissolution. But I am trapped and immobilized by not knowing how to connect or whether I should not even bother trying, and often I don’t even having enough energy to make a decision one way or another. These are too many feels, and the answers are tricky and elusive, so I continue to distract myself with Star Trek and orange cats.  Picard is very soothing, and Data’s interactions with Spot are moments of pure joy, distilled.

2. I am terrified about the future.

Terrified.

This contributes greatly to the accidental crying at inappropriate moments.

Will I be able to work when my PhD funding runs out in three months? Can my body handle a job that is less flexible than my current 10 hours/week TAship?  Can my mind handle a part time professor contract, should I be lucky enough to receive an offer?  Right now I think I can, but what if the brain-fog comes back with increased intensity?  If I don’t get a teaching contract, and I lose my health benefits, will I be able to afford my medications?  Is chronic illness a disability? If so, will I qualify?  How will I pay back these loans? What if I get even sicker because of the side effects of my (immune suppressing) medication?

I don’t know how to plan for the future, because my body, and therefore my future, is unpredictable. This is terrifying.

Entocort/Budesonide Warnings

Entocort/Budesonide Warnings

3. I am constantly trying my hardest and it never seems to be enough.

I remember what it’s like to be able to schedule various things into my day and have a balance of work and school and friends and chores and pet care and hobbies and meaningful engagement with the world. Now I can have about 1/10th of that, and it’s up to me to make choices about what to prioritize and what to set aside. Plus, I am now bad at lots of things I used to find easy. I am always exhausted, and I am often in pain. This is hard, and it’s frustrating, and it’s not fair. I am generally angry and sad and confused and also terrified, and usually trying not to feel these things and therefore from the outside I look fine, except maybe a little bit standoffish and cranky (exhaustion and pain will do that to a person). This is the thing about invisible illness. Everything is invisible from the outside, and people often make inaccurate assumptions.

It’s really hard sometimes to be patient, and calm, with all of these feels.

I am trying my hardest, always, all the time, but I don’t really know how to do anything any better, and I don’t know if I will ever become better at coping/life. I hope this gets easier, but I have no idea if it ever will.

***

Those are the reasons, as far as I can tell, for my last set of inappropriate mystery tears. They are no longer such a mystery, hooray! There’s probably more going on inside, but those are the three things I could catch ahold of this week, so that will have to do for now.

My hypothesis is that thinking about, writing down, and communicating as many of the tangled up feels as I can wrap my mind around will  a) help me to not break into tears again at inappropriate moments because that is mortifying b) save me money on proper therapy, and c) also help me stop having anxiety dreams about flash floods and drowning and everything falling apart, subsumed underwater.

Also I really want other spoonies to read this and tell me I’m not crazy and you know what this feels like and everything will be fine.  But only if you mean it, I don’t want you to tell me things that are untrue to make me feel better. I would prefer difficult honesty to comforting lies, please.

Welcome to my brain, I hope this glimpse inside has been informative, relatable or productive in some way. Now the things have been said, and I think I actually feel better, maybe.  A little less alienated.  Ready to set this aside and catch ahold of optimism again for a bit. Yay.

Love & spoons,

Me.

p.s. Following many good conversations, here is my Epilogue/Some Closing Thoughts on Chronic Illness & Friendship.

p.p.s. I also have a spoonie themed tumblr page that I use more than this blog—if you want more insights on coping, spoonie memes or cat photos, you can find me at: http://catladycolitiscoping.tumblr.com/

Edit/clarification re the friends/resentment part: The resentment isn’t directed at people for not being accommodating or anything like that, its different.  I resent that I can’t do the things I want to do.  Like physical things, e.g. I’ve had to drop out of Kung Fu.  I can’t even do the more active yoga classes anymore.  Or creative things–e.g. if I prioritize walking the dog and working on my dissertation, and doing the dishes, those are all my spoons.  There are no more spoons for crochet projects or personal writing or making music.  I miss being creative.  My interests haven’t gone away, it’s that I’m not physically capable of doing the things I want to do, and that’s what I resent.  I resent having to choose, and I’m envious that other people don’t have to make those kinds of choices.

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Problems with the trigger warning debate //on being triggered// ableist attitudes about mental health in activist movements

Trigger Warning: explicit mentions of sexual assault, suicide, addiction, domestic violence & other potentially triggering content

Trigger Warning specifically for cousins and aunts on my mom’s side: If you are reading this, you might not want to read the middle section (#2), it will make you very sad.  Please don’t read it unless you know you are ready.  Also please DO NOT show this to mom, it will not be good for her to see, and I dont’ want her to see it. love you xoxo.

I’d been thinking about staying away from this conversation, because I knew it would be hard to feel through the words I needed in order to express why these debates about trigger warnings are so terrible, to be honest and open enough to make this visible to you in a way that goes beyond the supposedly cool objective rational political and academic arguments. But I have too much to say, so I found the words, even though it hurts. I need you to feel, viscerally, what this might be like for me, and potentially for other people who experience being triggered.  It is impossible to do that without sharing things that hurt to share, feel, revisit, and maybe hurt to read as well.  Some of the content might be disturbing (see trigger warnings above).  Writing this and sharing it is hard.  It is deeply personal, and it involves peeling back layers of myself that take a lot of courage to explore and revisit.  It is not a detached academic or political debate.  Maybe this is why hardly any of voices in the debate around trigger warnings are coming from the people who want/need them.  But, I think it’s important for you to understand these things, and it’s important for me to think through how to enable you to understand. I also want you to understand how the kind of dismissal ever present in this debate (and often present as well in our organizing spaces and culture) hurts our movements (whether we define them as social justice, anarchist, environmental, anti-colonial). It’s important that you learn to see.

#1: trigger warnings and academia

I keep seeing academics posting about why trigger warnings are like censorship, or why they are an unnecessary waste of time and energy without any real consideration of what it is like to be triggered in a classroom.  (For those of you not in the know, trigger warnings are just where you warn someone that the content to follow might be upsetting. Like if you are going to talk about rape or suicide or something.  ^ like what I did, up there, under the title. Those are examples of trigger warnings.)

I’m an anthropology TA.  In anthropology, we talk about fucked up shit all the time, in the general areas of sexual violence, racism, colonialism, but super explicit, detailed, uncomfortable.  For example, one of the textbooks popularly used in introductory anthropology talks about (TW!) adolescent gang rape. I have another, very popular, and very well written intro textbook that talks about the normalization of (TW) rape in the context of fraternities and American universities.  It’s important that we cover this material.  It’s important that we understand how these things happen and the cultural logic that circulates regarding misogyny and patriarchy, masculinity, how sexual violence comes to be normalized. That we see these things not as exceptions, but rather learn to look at how they are tangled up in wider, dominant cultural practices and discourses (I.e. rape culture).  Anthropology is uncomfortable—it’s meant to be.  It involves troubling and poking holes in comfortable taken for granted notions about the world, and ourselves, and learning from that discomfort. We might look at how certain example of violence are not exceptions but rather how they are rationalized, embedded in our structures and institutions, reified and perpetuated through language and metaphors, thereby coming to a better understanding of how this type of violence plays out in our lives, everyday—how it affects us, the people we care about, as well as people we don’t even know.  It involves interrogating privilege and oppression in a myriad of complicated and intersecting ways.  This is what makes anthropology so important, and what I love about it (despite all of its fucked up colonial roots).

It’s important that we engage with this difficult knowledge and that we encourage students to engage with it as well.  BUT.  It’s also important to recognize that students deserve to know about the content in advance, so they can mentally prepare themselves, if needed.  Preparation looks different from person to person, with a given situation and varies quite a lot.  It might mean being absent that day, or attending, but remembering anxiety medication just in case.  It might mean making sure they’re someplace that feels safe before opening the readings. Or, simply, it might mean mentally preparing themselves so they’re not caught off guard and vulnerable when triggering topic comes up, but can continue to attend and keep up with the work.  This is the most likely in my experience.

I know what it’s like to be triggered during lectures.  I’ve had students who have been triggered ask me to talk with professors so that they could prepare themselves for specific content. Students who wait until everyone else has left the classroom, and you see how hard it is for them to talk about it, to have to ask, the bravery it takes to be that vulnerable and disclose.  You see how close the trauma is, how it pervades all the moments that others assume are innocuous.  It’s hard to trust someone enough to divulge that you need a trigger warning, because that involves disclosing why you need a trigger warning—even if you don’t spell your trauma out, it’s implied.  And now, on top of how difficult it already is to talk about, we have a host of articles circulating the internet, posted and reposted to Facebook, shaming these students as overly sensitive, indulgent, and dismissing their trauma as “shorthand for ‘not getting what you want’”, “feeling inconvenience in an affluent, convention society”.  That is fucked up.  It takes so much bravery for a student to divulge they need a trigger warning, and these students deserve nothing but respect. Add to the mix these ‘debates’ that minimize their experiences of being triggered, potentially on top of delegitimization that occurred around the initial traumatic event. (I.e. ‘Oh, that’s not really rape— he shouldn’t carry around that stigma for the rest of his life.  She was drinking, anyway’—> THIS HAPPENS.  All the time.)  Now it takes even more bravery.  And what about the students who don’t work up the courage to ask?  They shouldn’t have to share traumatizing personal information to have some warning about potentially triggering topics.  It should go without saying: being triggered is NOT the same as being offended or inconvenienced.  These students are not trying to get out of work/avoid difficult knowledge: they are trying to maintain being well in the face of trauma and all its continual reminders.  They deserve more respect than they’re being given in this debate.

I have a lot of issues with the things that are being said, but, for now, I’ll stick to just a few of the very big issues floating under the surface of this ‘debate’.

#2: Most of the people involved in this debate have no idea what it’s like to be triggered  (as this article points out).  This is what being triggered feels like:

 What it’s like to be triggered varies from person to person.  It also varies with how stable other life things are, and the kind of space a person is in mentally—how prepared they are, whether something has caught them off guard, what the rest of their day has been like, how safe they feel, how supported they feel. Since it’s different for everybody, I will try and convey a little bit of what this is like for me, so that you can begin to understand.

On the surface, I seem very calm and measured, even when I am triggered. In the past, people have misunderstood this to mean that I thrive in a crisis, that I am well adjusted to the traumas that have occurred throughout my life and are ongoing (i.e.alcoholic, abusive, recently disabled and also suicidal mother with her own history of trauma, as well as other family members with addictions and precarious mental health situations being the main ones, along with very big past things that are not, thankfully, ongoing for me like police repression*, my aunt being beaten to death by her shitbag bf on christmas, sexual assault).  I understand why it looks like I thrive in a crisis—my feelings shut down so that I can deal with whatever is happening.  I do not have to feel, which is preferable in a lot of ways to feeling all of the unmanageable overwhelming feelings.   It’s during the periods of calm, where something reminds me of the trauma, but I am far enough away from it to be able to feel, this is when being triggered might happen, and this is sometimes when it feels like I have to work the hardest to be emotionally well.

Some of the things trigger me: a newfoundland area code on my call display (she’s probably drunk. what did she do this time? Is she dead this time? fuck I can’t answer that), having people around me engage in small talk about suicide or homicide on an album cover as if it’s just like super artsy or something, not like it’s a HUGE FUCKING THING that affects people in a huge fucking way; lights on a cop car flashing outside my house; being around people who are drunk, videos shown in lectures of protesters being shot.  I try to avoid things that will trigger me the most, when I can, because it is exhausting, and super bad for me, and it is detrimental to healing. Let me explain.

 When I am triggered, first, it feels like I’ve time warped back into being 5yr old me, trying to steer and keep the car from running off the bridge in the middle of the night while my drunk mother lets go of the steering wheel to touch up her makeup in the rearview mirror on the way from the trailer park to the rez to see her (abusive, cop) boyfriend. (Other person present–mom– not understanding why this should be a source of panic, why this is alarming “just steer the fucking car, I’m almost done, you’re fine. Don’t make a big deal out of it.”) I feel that exact same helpless, trapped panic, but blunted to varying degrees, depending on the trigger, by dissociation (otherwise it turns into a panic attack).  I’m also transported back, simultaneously, to 12yr old me, sitting on the floor with a jagged piece of glass trying to figure out how to stop myself from just fucking ending it and what is the fucking point if this is what life is like—it hurts too much, and I don’t want it anymore (and also my mother never wanted me to exist in the first place, unpredictably flipping between how she loves me more than anything to how totally and completely I ruined her entire fucking life).  Then, before I can feel those things too much, I dissociate, shut down, because I cannot deal with feeling these things. I do not know how I got through feeling them the first time, and reliving it hurts too much as well. I have come a long way since then, but, although I am much, much better, these wounds have not healed, and I don’t know how to heal them or if it is even possible.  When I dissociate, only about 5-10% of me remains present, just enough to look normal on the surface, even though the rest of me is gone, dissipated, hiding out for awhile, closed off and unreachable. Until I come back in my body, into being able to feel myself in my body.  I don’t have any control over coming back.  It just happens, eventually, independent of the hollowed out shell that has stayed.  My mind goes blank, I don’t feel anything, I can’t think, can’t process, it’s kind of like I’m not really here, and it can take moments or hours or days to come back, depending on the trigger and a variety of other life things.   The theory goes that dissociation can be an important and helpful coping mechanism: as a child, being helpless with shitty things always happening, not having any control over the shitty things or being able to make them stop, feeling nothing, not really being fully present for awhile protects me or something and I come back later when it is more safe and things are calmed down and it is ok to feel stuff (my psychologist explained it better than I can—yup, I am now privileged enough now to see a psychologist. And I can’t stress enough how unhelpful it is to have internalized ideas about that kind of self care being an indulgence that shouldn’t be needed if only I/we were strong enough to just fucking deal. One should just suck it up after all and get on with things, so goes the popular—and ableist—discourse.)

Occasional dissociation in and of itself is something I have mostly figured out how to deal with.  It means that sometimes I’m closed off to the people around me, and it affects my relationships, it means I can’t function properly for awhile and that life things need to go on hold for a bit, and that I often avoid a lot of things that used to be a big part of my life (unless I am on medication.  then it is easier to be around stuff that would otherwise be triggering.  but i prefer not to be, for various reasons). Dissociating is mostly ok now—it doesn’t happen with super intensity super often, and I have sorted my life out in a way that I can take space, have support, have a lot of flexibility about when I work, when I have to leave the house, when I have to deal with other people (yes, this is a privilege, and I’m lucky to have it, it helps me keep from spiralling into being worse).  Dissociation, numbness, is something that happens, and accepting that it happens, when it happens, is part of what it looks like to work towards wellness for me now. (Also, it is far superior to panic attacks, which have also sometimes been a thing.)

But, when I haven’t had the time and space to sit with it, to wait it out, it can easily spiral into some fucked up terrible shit.  Numbness and impaired decision making when I’m already vulnerable has gotten me into trouble, as you can probably imagine, leading to more trauma, and more things that are triggering.  It is absolutely the worst idea for me to just try and ignore being triggered/numb and continue about life, without taking the time to wait it out, and then to process, reflect. It can be dangerous for me. Key point: having someplace safe (free of triggers) to wait it out is fucking important as hell. I can’t make good decisions and be well when I am triggered.  I can’t heal when I am triggered.  I need space to come back to myself in order to work on being well, balanced, stable, to be able to make good decisions and avoid repeating the cycle of all that is terrible, horrible, and tragic.  It’s grip gets tighter when I am emotionally unwell (even though I may not show it on the surface) but loosens again when I have what I need to take good care of myself (physical and emotional space, time, support). While I recognize that there is kindness and good in them alongside the turmoil and hurting, I do not want that life, the one like my mother’s, the one that led to my aunt being killed–how her addictions and past trauma shaped her decisions and how she felt deserved to be treated and who she felt deserved to be with, the life that some of my cousins teeter at the edge of and it panics me to see. The life that tries to pull me in when I am emotionally unwell–the life in which I am unstable, fucked up, can’t make good decisions, am doomed to repeat all the bad things I hated about all the grownups when I was little, as both the helpless panicked very small child and the slightly older hopeless one holding tightly to the jagged piece of glass in the corner and not knowing which decision to make. I don’t want that life, and I have to look after myself carefully to keep from falling into it. It takes work.  No matter how far I’ve come, it waits for me, and I am always conscious of the threats that are imprinted on my body whether through biology or enculturation or both, threats of always having the propensity to fall into addiction and self harm during a downward spiral, no matter how long I’ve been straight edge (no drugs or alcohol) or how good I’ve been to myself. I have to make choices that prioritize my wellbeing even when the choices are hard, even when choices make me feel guilty (i.e. distancing myself from family, from people I love, because it is triggering, and I am often not strong enough, ‘dropping out’ of the urgent work of political organizing because it is a stressor I am privileged enough to have some control over).    I am strong enough to do it, to be well, but sometimes it takes everything I have.  This is self care, and it is not an indulgence.  It is hard work, and it is important.

  An additional consideration….for those of us who have mental health AND auto-immune disorders or other mysterious health issues, the stress (I.e. from being triggered) or chronic stress (I.e. from being constantly triggered) can set off a cascade of internal physiological disregulation (which I am just now learning the precise cellular & hormonal details of, though it has been my lived experience for quite some time).  So in addition to intense emotional discomfort, and dissociating, losing moments, hours or days, having to relive overwhelmingly shitty feelings, and cling tight to keep from falling into becoming all the things I hate, I get sick(er). And if I don’t take the space to deal with the emotional stuff, I continue to get sicker.  And sicker.  There is no ‘sucking it up’ and getting on with things.  This is a harmful attitude, period.  You do not understand how harmful it is, or how hurtful you are being when you perpetuate it.

#3: Ableist attitudes in activist movements re health & mental health

Attitudes about mental health and triggering that involve assuming certain people are  ‘too sensitive,’ or ‘should be tougher and suck it up’ are damaging, especially considering how hard it is already to heal. (It’s also alienating when people you’d think are in your support network turn out to have no patience for, and instead even minimize and delegitimize issues that are critically important to your wellbeing.) I agree with those who are saying that trigger warnings are more than a ‘simple courtesy’.  There’s nothing simple about them, because in order to provide a trigger warning you have to genuinely try and empathize, understand why they might be needed, and respect the people asking for them.   

One of my friends, after posting an article that critiques trigger warnings as indulgent, made a comment about the “politics of safety” or “Care Bear Politics,” indicating,  if I understand correctly,  that we need to discuss the potentially demobilizing effects of an emphasis on self care.  I have been guilty of these attitudes in the past as well—i.e being dismissive of self-care when there is more seemingly more urgent work to be done (and I am truly sorry for this, for minimizing peoples’ pain, for not taking the time to understand.  I understand how hurtful that was now). What I see as most demobilizing now is the ableism and disregard in activist circles regarding health and mental health, compromising sustainability in favour of a politics of urgency. That’s what we need to discuss, if we’re worried about demobilization.  There is a huge glaring gap. Some people keep pointing it out, over and over again, and yet so many others keep refusing to see.  It’s hard to be involved in movements that persistently don’t take concerns about health and mental health seriously.  Movements that frequently put the blame on the those leaving as “dropping out” or “not being committed enough” instead of trying to understand why it’s not sustainable for those who choose to leave, or those who choose to taper off and redefine their involvement in other, less visible and obvious ways and struggle to fit. It took getting sicker than I have ever been to begin to see the depths of ableism in organizing spaces and communities when it comes to both physical and mental health, and to understand why these attitudes are so damaging, problematic, and demobilizing.  I hope my words are enough for you, and that it doesn’t take direct experience for you to see it and begin shifting the conversation in ways that are more respectful of a variety of strengths and capacities, not just the ones that are the most obvious.  Our movements aren’t unsustainable because we’re putting too much focus on how to care for each other. They’re unsustainable because we’re not.

 

 

Footnotes

*Police repression is always ongoing to some extent, but I’ve minimized my direct encounters with it by often avoiding rallies, marches, blockades, anything that might get confrontational, etc.  This might be perceived by some as “dropping out”.  For me, it’s what I need to make myself well.  There are too many triggers I have no control over.  The ones I can control, I do, by minimizing their impact on my (mental) health.

 

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Commentary on the Gluten-free ‘Fad’ & Derailing (part 3/conclusion)

Context: Extraordinarily presumptuous people (unintentionally) continuing to be irritating as hell and assert that gluten free is a ‘fad’, derailing explanations to the contrary, and continuing to assert that nothing they’ve said has been the least bit offensive.  Parts 1 and 2 explain why attitudes and discourses about dietary choices as ‘fads’ are problematic (don’t worry, not in academic language—mostly in swearwords and sarcasm).  Part 3 (this post) pokes some holes in derailing tactics commonly used after someone has already been called out for assholery. I’ve taken some time to calm down, so there are less swear words and less of a general snarky tone in this one (erm…maybe not, actually).  That’s either a good thing, or a bad thing, depending on your perspective.   Anywho, you may want to look back at the previous posts for context—i’m not big on summarizing things all over again at the moment.

7. “But I’m NICE!  I’m a good person!”

No, you’re not.  Niceness is not a thing you *are*, it is a way of acting, being, and respecting other people.  It takes practice, and it can vary from situation to situation.  You have been nice in the past, sure.  You try to make a genuine effort to be nice to people, great.  I mean that, it isn’t sarcasm.  This doesn’t, however, give you a niceness shield to hide behind in all present and future interactions where somebody questions how your actions, words or attitudes have a shitty impact on other people.  You still have to be accountable.  Unless you want to throw in the towel on being a legitimately good person that is.  You know, the kind of person who has empathy and respect for other human beings and their perspectives.  One who learns from mistakes instead of pretending nothing offensive was ever said.  One who practices active listening and avoids engaging in derailing tactics when being called out for shitty words/attitudes/behaviours.

I can’t think of a single instance where the phrase, “but I’m a nice guy!” is a good response to being called out for anything. The next time “but I’m nice!” crosses your mind, stop, take deep breath, and consider why this might be a problematic response and how you might more productively engage with the situation at hand. (Hint: when I say ‘productively’, I mean in a way that involves respectful listening rather trying to prove you’re right to the person calling you out.)

8. “But I’m just critical of the INDUSTRY making money by selling gluten free things to people who DON’T KNOW any better!!”

Why. Are. You. Making. This. Your. Business.?  WHY do you assume people don’t know any better, and that you know better than them?  Why do you focus on the marketing strategies of health food section but take for granted the marketing strategies and impacts of all the other foods in the grocery store? Why do you pay zero attention to how the prevalence of certain foods (i.e. wheat, beef, sugar) in dominant north american consumer contexts comes from a specific historical context and political economy involving the changing context of farming and labour, lobbyists and government crop subsidies, and not necessarily much concern for consumer well being? Why don’t you listen when people who need (or choose) gluten free diets tell you they are super happy about the growth of the gluten free industry and resulting accessibility of foodstuffs? (Why are you such an ass?)

Please. Stop. Talking.  There is a subtext in all of the things you are saying/posting.  You are still not seeing the subtext, even though I am explaining it very clearly and thoroughly. I honestly cannot comprehend how you can continue to refuse to see the subtext.  You must be very determined (or kind of stupid).

(yes, I know that last bracket was mean. nope, I still don’t take it back.  I feel no guilt for neglecting to pander to your feelings when you have continued to be an ass to me. I’m still angry, apparently.)

9. “But you’re being too SENSITIVE!  This isn’t even about you!”

Yes.  It is.  The only reason you think I have ‘legitimate’ health problems is because I have explained them to you.  Otherwise I get lumped into the category of fad diet follower all the time by people who don’t know me, people who refuse to take my illness and dietary choices seriously in lots of places throughout my daily life.  I should NOT have to justify my choices about my health in order to avoid being disrespected.  By well meaning friends.  By food service people.  By health care professionals. —Which is the worst by the way, and ends up doing a lot of harm.  How are people supposed to get the support they need from doctors and specialists when they too can often assume you’re exaggerating your symptoms or exaggerating the positive benefits of dietary changes, and that if you don’t test positive for this specific antibody, you might not really be that sick   Thanks, I didn’t come for a colonoscopy because it was fun btw.  Thankfully not all health care professionals are jackasses, but the jackasses make it much harder than they could ever possibly imagine, because despite their years and years of study, what the sick person is going through is supremely outside the realms of anything they have ever personally experienced in more cases than not. The medical jackassery I’m referring to is more than ‘a few bad apples’ and seems to be systemically rooted in a process of professionalization that subtly rewards being patronizing as a desirable trait in all the various medical fields. In my experience, good, empathetic, non-patronizing health care professionals are the exception rather than the norm. Also, the jackasses almost never know they’re being jackasses which is especially exhausting (like you, ‘friend’ who keeps refusing to see all the complexity that is embedded in the attitudes that you take for granted as simple and non-problematic.)  The worst is the health care providers that don’t seem to ever stop to ponder that they might actually be acting in ways that are detrimental to their patients, because they have spent quite a lot of time being validated by other self righteous know-it-alls, without ever having to genuinely listen to perspectives that don’t mesh with their current way of thinking.  This is absolutely exhausting and also demoralizing. If you haven’t been through this yourself it is probably impossible for you to actually get how much this sucks. You can try to imagine it, you can make yourself believe that you mostly get it, but in all honesty you can likely never truly conceive the depth of how shitty this is.  There are no words.

10. “Sorry if you were offended, but…”

Um… thanks, BUT…That was not a real apology.  Learn how to apologize. Google is a good resource.  I’m done now.

Other helpful links…

Derailing for Dummies is a helpful resource that breaks down the various derailing strategies I’ve pointed out in the last few posts, alongside quite a few more.  Please read this. You need to learn this shit.  It will make you a less shitty human being.  It will also help you learn to recognize when other people are being shitty, so that ideally you could try and help your friends be less shitty too.

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Response to condemnations of gluten free ‘fad’ part two

 

Continued….

Unfortunately there still seems to be some confusion about this whole matter. I will try once again to explain it as clearly as I possibly can.  I genuinely do want you to get this.  That’s why I’m taking some of my (limited) time and energy to explain it.  I promise to try and swear less if you promise not to get so defensive and to genuinely try and understand what I am saying.

It is problematic to denigrate avoiding gluten as a fad, as I explained in my previous post.  Some of you still aren’t getting this.  Let’s break a few things down in a bit more detail. We’ve already talked about some of the problems with how science has been taken up and mobilized in these conversations, but as this seems to be the sticky point, I will try to explain it one last time, with as much depth, clarity and patience as I can humanly muster.

5.  “But the SCIENCE!!!! I’m not judging!  I just believe in science!!!!”

Uh huh (skeptical face).  Yes, your conclusions (“just eat the bread!!”) are totally rooted in science.  Well done, give this guy a prize.

Those of you saying this more often than not misunderstand and misrepresent the science you are going on and on about.  You often overstate particular conclusions while ignoring other possibilities.

Hint: ‘Just eat the bread’ and ‘people are imagining it’, whether said or implied (usually said), is not a logically sound conclusion to the research you are citing.  (Did you even read the original research? Do you know what a statistically relevant sample size is btw?)

In this instance, you are using ‘science’ to justify a particular view you already have about an issue, and this view is already full of ableist and demeaning implications. Your view, as you’ve stated to me, again and again, is that “people should just eat the bread.  There is nothing wrong with them. And there is nothing wrong with them eating the bread.  Oh, but you’re an exception for sure.  It’s those other people I’m talking about.”  Guess what?  You actually don’t know shit about those other people.  You have a preconceived bias about their (lack of) health issues and their dietary choices, as well as their capacity to make good decisions for themselves.  You’re assuming you know what’s best for them—that you’re smarter than they are, that you know more about their health than they do.  Am I successfully conveying to you how patronizing this is yet? Furthermore, the viewpoint you’re espousing and encouraging and perpetuating is hurtful to those who shouldn’t have to prove they deserve to make choices for themselves about what’s best for their health and their bodies.  Nobody should have to prove or justify their own decisions about their own bodies and health to you, the super-interested-for-some-reason outside observer, period.

The science is not well understood. The conclusions you’re making with your statistically insignificant study are not scientifically sound.

Usually this is the point at which people backpedal and tell me they just want to understand the root causes.  “I didn’t mean to be offensive, but…”  “I don’t mean to sound patronizing but…” First of all, if your sentence begins like that, it’s probably best not to write the sentence.  If this is how your sentence begins, there may still be a problem with the way you are thinking about things.  (You wouldn’t start a sentence with “I’m not sexist but…” or “Not to sound racist, but…”, would you?  I fucking hope not.  Otherwise we have bigger problems than I anticipated.)

If you’re truly interested in understanding the root causes of these issues, how about: a) you have respectful conversations with those who have real experiences with this stuff instead of alienating the hell out of them by being an ass and consistently misunderstanding the implications of your words and how they affect every fucking day of some peoples’ lives; b) rather than assuming that just because things in addition to gluten cause symptoms,  people are making it all up and telling them,  ‘Guess what?  Good news! It’s all in your head! You can just eat the bread!’ consider researching additional causes and mechanisms.  For example, before the gluten free diet was popularized, the specific carbohydrate diet was a sometimes prescribed for dealing with celiac and general failure to thrive (before celiac had a name and a test and the antibodies were figured out and all that).  SCD eliminates ALL grains as well as sugar and other allergens and is understandably pretty hard to follow, which is maybe part of the reason why gluten free is more popular.  I would love more research on the specific carbohydrate diet and how it affects intestinal disorders.  Most of the research on SCD is focused on autism: how gluten, other grains and sugar affect another mysterious issue that involves both the brain and the gut.  Oh, right, while you were busy being snarky about how gluten free is a fad unless you’ve tested positive for celiac, most of you probably didn’t consider that avoiding gluten is also important for autism and that ‘bougie SUV driving’ ladies in the gluten free section of the health food store might be buying food for their autistic kid. Who the fuck knows.  Not you or me.  So stop assuming and judging already.

But I forgot, the tiny (statistically irrelevant, not terribly recent) study you cited obvsly shows that avoiding gluten is a bullshit fad tho, and something can’t possibly work for a variety of not well understood health issues if its mechanisms aren’t yet understood and science hasn’t validated the shit out of it.

Also: you don’t get to say something snarky about fads and then backpedal to tell me you want to know root causes of dietary distress and that you’re totally innocent of being an ass.  You said the shitty thing.  Be accountable for the shitty thing you said.

6. “But it IS a fad!  People are doing it for the wrong reasons! They will eat things that are bad for them!  They will be healthier if they eat the gluten! I’m telling them for their OWN GOOD!”

Uh huh.  Because avoiding gluten is what’s to blame when people eat diets high in other low quality refined grains, lots of sugar and saturated fats etc.  Um, no.  Gluten free or not, people might make dietary choices you disagree with.  And you will probably continue to lord it over them with an unmistakable air of moral superiority and smart ass ‘I know what’s better for you’ attitude.

Let me emphasize this: There is nothing inherently unhealthy about a diet that does not contain gluten.

Replacing gluten with rice and corn might not be the best thing ever, yes, I agree with you there.  That’s why I replace gluten with VEGETABLES and FRUIT and meat instead of other grains, dairy, soy or beans.

Regardless of all that, people are allowed to make choices about their diets that you don’t agree with.  If the gluten containing version of mac ’n cheese is replaced with the rice noodle version, it might not have the most nutritional value ever, this is true.  However, it’s still not your business.  It’s the business of the person eating the mac and cheese.  She (or he) does not deserve to be scrutinized for their choices under your all knowing eye and judgmental attitude.  Especially, when, as I already pointed out, you probably can’t actually tell the difference between who deserves to be respected when making personal dietary choices versus who is the mindless lemming fad follower y’all keep going on about.

If I’m not mistaken (and also from My Own Personal Experience rather than the realm of generalizing about everybody’s choices, health and intentions), vegans sometimes replace animal products with more low cost/low quality grains and soy.  Poor people often eat a lot of shitty quality food too (also from My Own Personal Experience as a small child with a broke ass single mom who wasn’t the most educated ever about food and nutrition).   Do you scrutinize and judge vegans and poor people’s dietary choices in the same way?

That was a trick question.  If you do, you’re probably an ass on quite a number of levels.  If you don’t, you’re an inconsistent ass who has it in for some dietary choices and not others.  The way to not lose at this question is to STOP SCRUTINIZING and judging OTHER PEOPLES’ CHOICES about health and food and assuming you know what’s best for them and that they are uneducated mindless idiots. I must have missed the memo where you were appointed knower of all things and overseer of what’s best for everybody.  Not patronizing at all.  Have some fucking respect.  It’s not your business.  It’s theirs (ours).

And to review a few key related points from last week…

1. It is disrespectful to call avoiding gluten a ‘fad’.  You are not in a position to judge other peoples’ health decisions.  Your judgments delegitimize and minimize peoples’ health concerns and belittle their capacity to make sound decisions about their own health.  Your judgements pressure people to divulge personal, sensitive, and embarrassing health information in order to avoid being lumped into the undesirable category of uninformed pawns of the health food industry. Your judgments do more harm than good.

2. As diets without gluten (gluten free, paleo, SCD, gaps) become more popular, they become more accessible for those who need them (again, those who need them can work with their doctors and/or self select and don’t need your all knowing benevolence to bestow upon them the right to follow the diet of their choice without judgment).  Food alternatives become more accessible.  Information becomes more accessible.  For example, my doctors and specialists never made information about SCD or paleo available to me.  The increasing popularity of these diets is largely the reason I stumbled across them, decided to try them based on other peoples anecdotal evidence, and was able to access the information I need to (mostly) control my health issues when nothing else worked and I had no answers.  These issues are not widely understood.  People trying out a gluten free diet harms me in no way.  Rather, it helps me a fuck of a lot.  It helps people understand my diet.  It helps make restaurants, grocery stores and food manufacturers more aware of my needs.

3. The frustration experienced by those involved in food prep, or the annoyance you experience when you’re delayed at a restaurant or something when someone else is asking questions about food preparation is not even close, or even comparable really, to the pain and frustration people who need gluten free diets experience every fucking day of their lives.  It is sincerely and completely problematic for you and food industry workers to assume you know more about a given person’s health, and to belittle dietary restrictions or judge them (us) as hapless pawns who don’t know what’s best for themselves (ourselves) if they (we) don’t prove they (we) are deserving of a gluten free diet by revealing personal and often embarrassing health information.  Nobody should feel pressured to prove to you that they are sick and that they deserve your respect about their dietary choices.  You should have more respect for peoples’ capacity to make decisions for themselves about their health, period.

4. The science is not well understood.  You don’t understand the science very well.  Stop assuming that you know more than everybody else and what’s best for everyone else.

I think that about sums it up.

 

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