Sunday, November 23, 2014

The Complicated Reality of "Fake" Allergies

I already mentioned this in passing, but after going to the doctor for a variety of oddball symptoms... I'm officially allergic to wheat.  I'm both unsurprised and totally shocked by this.  I already knew that wheat made me fell hell, but I didn't expect it to come through in an actual allergy test.  It's complicated.  It's also kind of inspired me to finish writing something I wanted to ages ago.

Anyway, a while ago I read a thing about a girl who tragically died at camp when the mess hall served her a Rice Krispies treat that had peanut ingredients in it.  She'd eaten the same treat at the same camp before without incident, but the recipe was changed without informing her.  Her medication to treat the allergy didn't work, and she died.

There are a lot of people I know who treat this as a result of people claiming they or their kids have allergies when they haven't been diagnosed with them.  The implication here is that when people claim they're allergic to things they aren't, or say their kids are allergic when they aren't, it becomes a sort of collective "cry wolf" effect where people stop believing that anybody has a legitimate allergy.  This then results in people being more careless about accommodating allergies because they assume the default is to lie.

Before I go into why exactly this is bullshit, I'd like to discuss a few reasons somebody might want to fake an allergy.  If you're uninterested and want to read about accessibility instead, I encourage you to skip down to the next heading.

Although I am simplifying by just saying "food" here, this essay also counts environmental and animal allergies:
  • They have weird symptoms that they either know are mitigated by avoiding a particular food, or that they suspect are from that food.
  • They don't have an allergy, they have an intolerance or toxicity reaction, but people don't understand the difference so they just cave.
  • They strongly suspect an allergy, but don't have easy access to an actual diagnosis.
  • They have some sort of ethical or religious restriction against eating a particular food or food group, but people don't accommodate them.
  • They strongly believe a food is bad for them for whatever reason, but everybody else thinks it's wholesome and necessary.
  • They desire attention or prestige in communities where dietary restrictions are considered "in."

I'll talk about the last one first because I'm sure that's what people are assuming when they get all up in peoples' case over an alleged fake allergy.  When people accuse others of attention-seeking, what they often fail to recognize is that attention is important to a person's sense of self.  There are always people who try to fluff up their uniqueness because that's a quality that's valued in a lot of cultures.  It's just important to recognize that they're not just doing this for the hell of it, they're probably attempting to fulfill a very real human need.

The others, though, are a lot easier to talk about.

The first three are all cases in which have well-documented, obvious reactions to a particular food... or who at least have obvious reactions to something.  In fact, if you look at the forums of literally any diet out there, you'll find people who are desperately looking for dietary cures for all sorts of ailments that are associated with the foods we eat.  Itching, asthma, difficulty maintaining a preferred weight, gastrointestinal distress, acne, malaise, aches and pains, depression, these are all things that are dramatically reducing peoples' quality of life that can be tied to diet but are typically treated with pharmaceuticals instead.  And while I maintain using pharmaceuticals to treat these things is perfectly fine, many people don't want to do that--or they can't afford to!--and so they search desperately for a dietary cure instead.  In many cases, cutting out a particular food entirely is the way to go, and it's just easier to say "I'm allergic" than to explain in any more depth.

An allergy is a specific type of response to a food or environmental allergen.  Not all food issues are actually allergies... celiac disease is different from a gluten allergy, lactose intolerance is not the same as a dairy allergy, and there are toxicity reactions as well.  For instance, I often will tell people I'm allergic to morel mushrooms.  They make me puke my guts out.  It's awful.  But it's not actually an allergy, it's a toxicity reaction.

Next we have people who have no actual documented reaction to a food, but who have some other reason for avoiding it.  A non-allergic paleo eater, for instance, might claim to be allergic to wheat, dairy, and/or peanuts when they merely don't want to eat them because they believe they're sub-optimal foods.  An observant Jew or Muslim might claim to have a dairy and/or pork allergy (yes, pork allergies exist).  A vegan might claim to be allergic to eggs.  After people who are assumed to claim an allergy just for attention, these are probably the most reviled.  And if you're the kind of person who claims this... well, cool it.  Here's why.

People who claim to have allergies when they haven't been diagnosed with them are doing it because they have a hard time getting accommodated any other way.  And that's really sad.

Listen, if you were to ask me if I think being a vegan is a great idea, I'll say "fuck no" and give you all sorts of reasons why vegan mythology is crap and vegan diets are sub-optimal for you.  But vegans still should have every right to have good-tasting, reasonably-healthful food available to them.

When they don't, that's when you get people who claim to be lactose-intolerant people with egg and fish allergies who were all bitten by Lone Star ticks.  Non-vegans can be extremely defensive about vegan diets and it can be hell trying to convince a non-vegan that vegan options are necessary.  And the same can be said for any dietary restriction out there.  I mean, I knew a woman who intentionally put bacon fat in a meal and gave it to a Muslim child just because she hated that child's parents.  As a paleo eater I've been constantly nagged at by people who take it personally when I don't want to eat their pizza or cinnamon rolls, who constantly say things like "just one won't hurt you" but who guilt you until you eat at least five of 'em.  So in an environment where people are constantly pressuring people who have ethical, religious, or health preferences that forbid eating a particular food to eat things they don't want to, it gets pretty goddamn tempting to just say you're allergic to it.

People have the right to have their food accommodations met even if they don't have a life-threatening allergy.  Other people just don't recognize that.

Oh, and I also should mention... did you not notice that people are flippant about allergies regardless of whether or not there are fakers out there?

Seriously.  You can talk all day about how people claiming fake allergies are making it hard to take people with real allergies seriously, but it won't change that people have been exactly as shitty to people with life-threatening allergies since forever.  The victim blaming and charges of oversensitivity laid on people who have such allergies is mind-boggling, and it has nothing to do with fakers.

Consider that Jack Halberstam article a while ago where he rails against scent-free policies at conferences (among other things).  The assumption he made was that people are getting more and more sensitive... the reality is that people who have extremely uncomfortable or even life-threatening allergies to scents just weren't going to those conferences because they weren't being accommodated.  Speaking of scent-free policies, I have gone to two "scent-free" policies where people wore scents just to spite the policy... knowing that those policies are in place because people have allergies.

In another case, a woman I know who is allergic to mosquito spray worked at a summer camp.  Literally the only thing people needed to do to accommodate this was to make sure she wasn't in the general vicinity when spraying it.  She still wound up in the hospital that year, and when I tell this story people are more likely to complain that she shouldn't have been working at a camp than they are to recognize that other people failed to accommodate her.

At the same camp I tried desperately to get the cookstaff to mention when their desserts contained common allergens like peanuts and tree nuts after two horrifying incidents.  In one a child came up to me with a half-eaten cookie.  She was allergic to tree nuts, but the cookies looked like they only contained chocolate chips.  In another, a child almost ate a peanut butter cookie when she was deathly allergic to peanuts.  They never acknowledged this extremely simple request.

Just look at the time and energy people take out of their busy schedules to complain about the basic decency of accommodating for allergic people.  There's a project called the Teal Pumpkin Project that aims to make Halloween more accessible for children with food allergies.  It's a voluntary program where you paint a pumpkin teal and you put up a sign indicating that non-food treats are available at your house for children with allergies.  People had the gall to complain about this being "oversensitive."  They do the same about peanut allergies (even in schools where there are documented cases of children with severe allergies to peanuts).

This attitude is not caused by fakers or self-diagnosers.  It's caused by a chronic, long-standing lack of concern for accessibility and lack of accommodation for peoples' food requirements, regardless of why they have those requirements.  We can't blame non-allergic people's speculations and fibs for what is a wide-reaching, societal problem.

A Quick Update And A Trans Male Injecting PSA

I haven't updated here in a while.  I've also been kind of off the paleo wagon for a while.  I've hit some "life snags" so to speak that have made maintaining any sort of motivation difficult.  I suffered a neck injury in a car accident that led to a lot of physical therapy and don't-give-a-fuck, and in addition I'm living in an environment filled with wheaty, sugary foods that are constantly being pushed onto me, complete with nagging guilt trips.  And if you're reading this right now thinking about one of those insufferable "No Excuses" Facebook posts, you just might be the kind of person I originally wrote this blog to combat.  Just saying.

Quick update: I wound up going to the doctor for various irritating symptoms and found out that I legitimately have a wheat allergy.  So far it hasn't helped with the nagging guilt trips, but that's a subject for a different thing I'm planning on writing (and have been planning on writing since long before I was diagnosed with any allergies).  I also almost passed out during a phlebotomy, which is directly related to my poor diet and weight problems.  Will these factors be sufficient motivation to continue?  I hope so, but I've had some damn good motivational triggers go sour before.

Anyway, enough of that, because I have something important to talk about that's relevant to trans men as well as anybody who injects testosterone: Please don't tell people it's safe to reuse your syringes and drawing needles.

I'm mentioning this because I'm reading a forum thread meant for trans men in which multiple people are talking about re-using syringes and drawing needles like it's no big thing.  At least one has said that his doctor told him that reusing the drawing needle is OK "because that needle never goes into you."

First, let me mention that I understand sometimes people do these things out of necessity.  Sometimes pharmacies are ridiculous and don't give you enough syringes, not everybody lives in a place where they can legally just buy extra syringes, not everybody even lives in a place where they can get testosterone legally.  People make do with what they have.  If the choice is really between re-using a drawing needle or syringe and not getting the medication you need, I'm not going to bother you for it.  Harm reduction is important, even when it's not popular.

But I need you to stop acting like it's no big deal or carries no risk.  Re-using products that are meant to be sterile always carries a risk.  And the explanations people are giving are quite frankly horrifying and miss the entire point of sterile injection supplies to begin with.

When you have a needle, syringe, or set of both in the original package, that package is sterile.  The testosterone itself is also sterile.  That equipment has been kept out of the elements so that it can't be touched by any of the random crap floating around in our air supply.

Once you have opened a package, it's exposed to the air and can't really be considered sterile anymore.  It needs to be used before the aforementioned random crap in the air supply attaches to it.  From that point on, everything that needle touches also needs to be sterilized.  That's why you take an alcohol prep pad to the top of the T bottle, and it's why you use the same on the injection site.  Everything that needle touches that is not sterilized is a contaminant.  If your needle taps into your desk before it goes into your T bottle or before it goes into you... that's a contaminated needle now, and ideally you will change it.  If you take that contaminated needle and then punch it into your T bottle, that T is also contaminated. This is why needles and syringes are one-time-use.  They even say this right on the package, so don't act like it's a huge surprise.


When it comes to users of illegal drugs especially, there are instructions available on how to clean them for reuse and sharing.  This is a harm reduction technique.  It's very risky, but it's better than not cleaning them for people who are going to reuse their needles and syringes no matter what you tell them.  These techniques typically don't work for testosterone.  Testosterone is usually carried in oil... sesame or cottonseed... and cleaning them is just not reliable.

To make matters worse, it's clear that a lot of trans men who reuse syringes and drawing needles are either just letting them sit in the air for a week or rinsing them with regular tap water.  Leaving these supplies in a non-sterile environment compromises that sterility (otherwise there would be no need to sterile package them to begin with).  Regular tap water isn't sterile, either.

I know some of you probably have heard people say--or are one of the people who continues to say--that you reuse syringes all the time and haven't gotten an infection.  And you know, it's true that if you reuse a syringe it's not an automatic guarantee you're going to get an infection.  This is a risk that grows over time as you continue to make these decisions.  Several years of testosterone injections are bound to result in some mistakes made... accidentally dunking your needle in an artery, injecting air into yourself, having to stick yourself three times in a row because you screwed up the first two times.  It happens... we just need to make sure it happens less by taking all possible precautions.

Finally, what can you do if you go through syringes too quickly or are broke?  First, you can contact your doctor.  Syringes are extremely inexpensive, and there's always a chance your doctor will just give you some spares if you're in a tight spot.  If money isn't the issue but you just find yourself running out of supplies (maybe you drop them a lot or your dosing has been a bit weird), I recommend you order--if it's legal where you live--bulk needles and syringes so that you don't run out.  There are also needle and syringe exchanges, some of which specifically cater to transgender participants.  When I buy syringes and needles combined, they're usually about $25 for a hundred of them including shipping.  If you have some trans friends you can even split that cost (on a related note, if I'm the trans friend, you can just ask me for some because I have dozens extra--again, mentioning for clarity that it's totally legal here to do that).  There are also, of course, needle and syringe exchanges, some of which cater specifically to transgender people.

Again, I don't mean to write this to shame people who legitimately feel they have no option.  The inability to get safe injecting supplies isn't necessarily a failure, it's a human rights and medical accessibility issue.  Because it's an accessibility issue, it's important that we don't act like the need to reuse these things is normal and safe.  It really isn't.