To those lamenting the gluten free ‘fad’. READ THIS.

In response to all those out there lamenting the gluten-free ‘fad’….

Shut the fuck up.

That’s the main thing.  Just shut the fuck up.  You’re being an asshole.

Now that that’s out of the way, sit the fuck down, and listen.  Really listen.  Don’t interrupt.  Don’t formulate an argumentative response in your head while you read my words.  Don’t lament to me about your (good) intentions.  And especially don’t talk down to me as though you’re smarter than I am.  (Guess what, unless you’re doctor who or sherlock fucking holmes, you’re probably not.)

OK, so, I know that some of you consider yourselves my ‘friends’, and you’re simply too privileged to realize that you’re being hella thoughtless.  So let me take a deep breath, channel some patience from deep within, and attempt to break it down for you.  Hopefully, you will pay close attention, stop being an idiot, and we will be able to remain friends.  I sound harsh, indeed.  I have run out of patience.  This affects every day of my life, and people like you, people minimizing and delegitimizing peoples’ VERY REAL HEALTH ISSUES, are the bane of my existence.  You make every fucking day harder for me, so thanks for that.  No really, thanks (read: fuck you).

Here are some of my problems with your analysis, in no particular order.

1. WHO the FUCK are YOU to decide which people have ‘legitimate’ health problems and which people are mindless lemmings and ignorant about all things (or, to paraphrase a friend who has since apologized and recanted, ‘bougie SUV driving granolas’).

Do you even KNOW how much bullshit we have to go through to get diagnosed? How long we have to wait for tests and referrals?  How painful, invasive and time consuming some of these tests are? And after that, how inconclusive so many of them are?  Do you know how often doctors change their minds about these diagnoses, because some of these health issues are fucking mysterious as hell and SCIENCE DOESN’T HAVE ALL THE ANSWERS?  No, I didn’t think so.

How would you like to have a camera shoved up your fucking ass after a day of laxatives or enemas after weeks or months or years of chronic diarrhoea, exhaustion, migraines and a host of other mysterious and unexplained symptoms to be told ‘oh you don’t really look that sick’ or ‘we’re not really sure what’s wrong with you.  Sorry, the tests are inconclusive!’ And to be told after all that, ‘just keep doing whatever makes you feel better’ and then have people judge you for your supposedly unnecessary, subjective and ‘misguided’ lifestyle choices?

So some of us don’t happen to have mother fucking doctor’s notes saying we have celiac or crohns or whatever, and maybe can’t tell you that our problems are caused by a specific protein acting in this specific way (‘cause not even our doctors know).  Do we have to otherwise PROVE to you we’re deserving of making decisions about our diets that don’t make us sick? To divulge personal (and often embarrassing as fuck) health information to you to get your fucking respect about our life decisions, instead of having you assume it’s all made up and in our fucking heads? ‘Cause that’s basically what your’e saying when you’re all like “ooh are you celiac?  No? Oh, well then a gluten free diet is dumb.”  Thanks, that’s really helpful.  You’re a swell person.  Glad we’re friends. High five.

Guess what?  You actually CAN’T tell who has celiac by looking.  That privileged looking yoga bag toting lady in the health food store may well be fucking celiac, and even if she’s not, shut the fuck up.  It’s not your business.  It’s hers. (For the record, I do yoga.  It makes me feel better.  I recommend it to any of you with crohn’s, celiac and related things.  Also, the people there are usually very nice, unlike the assholes on the internet who like to make fun of them.)

2.  Are you trying to defend our honour from all those undeserving people out there consuming gluten free food?  Do you think there’s a limited amount of gluten free food in the universe, and that if people who aren’t celiac eat it, there won’t be enough for the rest of us?

Because that truly is stupid.  Yup. check your saviour complex, thanks, I don’t need you to speak for me. Really, I don’t.  I fundamentally disagree with you, and you aren’t doing anyone any favours.

Please god(dess), let all the rich ladies in the universe learn all they can about gluten free, SCD & paleo diets.  You know what that does for me?  It makes the food I need more accessible.  It makes the information I need more accessible.  It makes grocery stores, restaurants and food manufacturers more aware of my needs.  It means that sometimes I can have glossy pretty cookbooks with new and interesting recipes and not feel so goddamn depressed about never being able to eat any of the delicious things.  It makes it less exhausting to live everyday in a society and culture that is not built for my needs.

Do you have ANY idea how isolating it is to NEVER be able to eat food at parties, potlucks, restaurants and just about any other kind of gathering? To never be able to just grab something on the run, buy cheapass bagels or hot dogs and keep up with the rest of you who do have that luxury?  To ALWAYS have to prepare food, for yourself, with more expensive ingredients, in a very specific and often labour intensive way? (Probably when you’re already worn out from being sick and also exhausted from having to consciously always make the decisions that are healthy for you when everyone else seems to have easier, cheaper more convenient and tastier food options.  Oh, and don’t forget all the snarky people in the background wondering why you go through all the trouble when really, gluten intolerance doesn’t exist and you’re making it all up.) Yeah, you’ve probably never considered this.  If you did, you wouldn’t be such an ass.

The increasing popularity of paleo, SCD & gluten free diets means that, after two years of never eating out, I can go to (three) restaurants and occasionally have (usually too expensive) food it doesn’t take me hours to prepare when I’m already exhausted from being sick.  Glad I had to take the time to explain that to you.

Gluten is not a fucking hipster issue.  It’s not like it loses its appeal as it gets cool.  There is a diet I have to follow no matter how hip or underground it is. It’s already hard as fucking hell to keep to, and I am happy as fuck that a lot of generic grocery stores now have an entire gluten free sections.  I hope it gets more popular, and therefore gets cheaper so that I can continue to afford to fucking feed myself when my scholarship runs out and the bills keep coming.  My food costs a lot more than your food.  You have no idea how much this sucks for us.  So keep your snarky fucking bullshit to yourself.

3.  Oh, sorry, am I being insensitive about how very frustrating it is to you as waiter/waittress/chef/person involved in food prep in some way?

Not. Fucking. Sorry.

I can’t believe I even have to respond to this one.  Ok let me get this straight.  You’re frustrated about being asked terribly annoying questions by terribly annoying people in your place of work, and you think you know more than they do about their health.

YOU think it’s frustrating? Poor you.  Boo fucking hoo.

Try fucking LIVING with some of this SHIT for every fucking day of your goddamn life.  Cry to me then, asshole.

Also see point #2 about accessibility.  And point #1 about how I shouldn’t have to fucking prove I deserve to eat something that won’t make me sick or get judged as an idiot pawn of the health food industry and have you not take my dietary concerns seriously.

4.  Ooooh, do you want to enlighten me with some of the SCIENCE you assume I can’t read for myself?

Thanks buddy!  I totally haven’t already researched the shit out of my health condition and every fucking detail related to it.  I’m sooooo glad you could explain it to me!  You’re obviously super smart and I should be grateful to have your help.

Yeah, thanks.  Guess what.  Not only am I getting my ph fucking d, but I have a background in health sci before ditching it for something I found more relevant to my life (at the time).  And even if I DIDN’T have all those fancy letters behind my name and training in reading academic and medical articles, authenticating sources and analyzing their methodologies, results and conclusions, I STILL wouldn’t need you to talk down to me about MY health issues.  Medical and scientific expertise is NOT more important than a sick person’s lived experiences, and their knowledge of their own bodies.  Science & medicine are always works in progress, they’re evolving, and their constructs don’t fit what I have right now.  Experts have told me ‘oh you don’t really look that sick’ and that I might have like 6 different things or maybe this thing or that thing but no official fucking answers.  This doesn’t change the fact that if I don’t keep to these extreme lifestyle changes I would worry about shitting myself 24/7, not be able to take care of myself when it comes to basic fucking daily things, and in all probability would end up in the hospital for malnutrition because my fucking digestive system hates me.

Have you heard the term ‘mansplaining’?  No? Look it up.  There is is parallel and related phenomena with chronic illness where people often feel the need to explain things I already fucking know (usually men, imagine that).  It’s annoying.  Don’t tell me about the fucking science unless I fucking indicate to you in some way I want to talk about the fucking science.  Chances are, if you’re talking at me, or down to me, I don’t. 90% of the time you don’t even fucking understand the science you’re trying to explain to me.  Nutrition is complex.  Intestintial/digestive/autoimmune disorders are complex.  Just because something IN ADDITION TO gluten makes me sick, it doesn’t mean gluten doesn’t make me sick. That’s not how logic works, and your conclusions are bullshit.  I, for example, can’t eat ANY grains, sugar, dairy, soy or beans.  No, this is not necessarily very well studied, and it isn’t accounted for in the goddamn studies y’all keep posting misguided reports on.  The point is, I don’t need to have 12 university stamps of approval for me to recognize the difference between your smartass ‘just eat the fucking bread’ approach which turns me into a completely incompetent sick person glued to the toilet with constant migraines, gut pain, and about 6 other related symptoms or not eating the fucking bread (and grains and sugar and dairy) and being able to have a relatively almost normal life. Nor does anyone else making personal fucking choices about their health/diet. Fuck you, it’s not your business.

I could go on.  But I think that’s about all the explanation you deserve for now. (It’s actually more of an explanation that you deserve, but hey, I’m feeling generous.)  If you’re mad about my snarky sarcastic tone,  you can pretty much just fuck off, and we don’t need to be friends. Guess what? I don’t need friends like you.  You’re a horrible person, and you suck.  If you’d like to try and prove me wrong and defend your original position of ‘gluten free diets are dumb’, be forewarned I’ll probably delete you and never talk to you again. (I might also fantasize about which combination of kung fu moves will cause you the most pain and emasculation because I am fucking mad, and I can actually hurt you quite a lot, and this is nice for me to know in my head.)  This might be a fun hypothetical debate for you, but it’s every day of my fucking life, and I’m tired of having these conversations again and again. I’m 100% over even pretending to be patient about any more of your bullshit. I give exactly zero shits about your point of view, and you, my ‘friend’, are an asshole. If you are genuinely trying to understand the above arguments and would like to continue the dialogue in good faith, by all means, I am open to this.  But the best fucking thing of all would be for you to shut the fuck up, listen, absorb the words, reread if you have to, and try and go about your days being less of a dick to people who’s problems you don’t understand.

Posted in chronic illness, chronic illness microaggressions | Tagged , , , , , , , , , , , , | 8 Comments

grieving & chronic illness (this is what it feels like)

I have moved this post to my new blog, as I no longer use this one, and apparently google penalizes you for duplicating content.

Grieving & Chronic Illness (this is what it feels like) was my first attempt at expressing the grief that comes along with being sick forever. I wrote it while still in the especially difficult space of pre-diagnosis, before having a name for the changes that were happening to me, and before finding the spoon theory and chronic illness support communities. Writing this led me to those support communities, so this piece holds a special place in my heart. You can find it here.

Posted in chronic illness, spoonie feels, Uncategorized | Tagged , , , , , , , , | 8 Comments