Thursday, September 4, 2014

Your Stigma is Making my Label Itch

Labels are odd. They have their uses, and over reliance on them is a dangerous thing, but carrying certain types is a strange experience.
Wouldn't mind this label.
By ArielCo, original by Oskay [Public domain],
via Wikimedia Commons

Up until high school, I spent a good chunk of time in the special education classroom, thanks to my dyslexia. There, I met all sorts of kids with an impressive range of disabilities. I remember kids with epilepsy severe enough to impact their education, other learning disabled kids and some kids who didn't talk about their diagnosis.

In addition to that, I regularly saw the school counselor, and belonged to a support group for kids from broken families. Through that group, I got to know others who struggled with the fallout from situations that mirrored my own or were far worse.

We were all kids struggling with problems I later found out many adults couldn't deal with. More often than not, aspects of those problems stick with us to varying degrees today. We all carried labels, and the stigma that came with them put massive bull's eyes on our foreheads.

Obviously, I made it through those rough years, and once I hit adulthood, found more labels applied to me. The one that feels the strangest is the one my asthma gives me: having a chronic illness.

That just sounds so melodramatic, especially considering my problems are so comparatively minor to that of many of my friends. My symptoms are relatively well controlled with minimal medication, which seems pretty rare after having it for over 20 years, now.

When chronic illness is mentioned in the media, it's usually used to describe folks who can't get out of bed, or are on about five hundred types of medication. It doesn't seem to apply to those of us who are pretty healthy, outside of flareups and following periods of weakness. When I was diagnosed as a pre-teen, I was just happy to be able to breath again. I didn't even realize it was classified as chronic until adulthood.

When I sit and think about it, though, I realize my lifestyle isn't what most people would classify as "normal". I wear dust masks when I clean, which happens every week to keep the dust levels down. I don't use commercial cleaners, outside of the most mild products I can find. I actually make most of my cleaners, because they have less of an effect on me than most things I've tried. I avoid certain foods, and restrict others.

When I start feeling sicker than usual, I look at the way I've been living. Have I been eating too much dairy? Red meat? Processed foods? Is there mold growing somewhere in the house? Has there been a change in our toiletries or laundry stuff? Have I been feeling more stressed out than usual? Is this the beginning of an infection, or is it just an allergy/asthma flair up?  If I DO get an infection, there's a new list of things to think about, primarily around activity level.

I do my best to avoid areas that are full of my triggers, like basements and smoking sections. If people are smoking at a bus stop, I've gotten very good at figuring out how to get upwind of them. I cover my mouth and nose every time I leave the house when the temperature dips below 40 degrees Fahrenheit (4 degrees Celsius). I avoid submerging myself in cold water, and I keep a pretty close eye on when certain plants bloom. I make it a point to exercise at least twice a week, and when I do go running, I pay more attention to my breathing than trying to meet a distance or time goal.

I always carry a rescue inhaler with me, and keep my prescription up to date, just in case I need to refill it, or the old one expires. I keep track of how often I use it. If it seems like I'm using it a lot, I re-evaluate my surroundings and visit the doctor if I can't correct what I'm reacting to.

If more medication is suggested, I research side effects, how long it's been on the market and ask about anything I should avoid. If I try it, I have to watch for signs of allergy, like the hives I seem to get every time I take a commonly used antibiotic. 'Cause, y'know, there's always the possibility of a severe, life threatening reaction.

(I think the medication research should be common sense, but my body's hypersensitivity has highlighted that step for me.)

This is all stuff I'm used to dealing with, and it's all in relation to keeping my breathing clear. Seeing it all written out, I'm a bit surprised at just how much of it there is. I guess I do go through a fair amount to avoid worsening my asthma.

I don't think I'm chronically ill, though I do have a controlled chronic illness. I still don't fit in the box I'm told I'm supposed to.

The more I linger in the world of labels, the more I realize the importance we put on our labels effects our identities. I also realize there's a difference in whether others know about those labels or whether they don't.

Sure, some are necessary to disclose in some situations, like if I go hiking with a group, I notify people of my asthma, and what to do if it flares up. (Generally, let me take my meds and rest for 15-20 minutes, so my heart rate can slow down and lungs can loosen. DON'T freak out. DON'T push me. DON'T get angry.) I'd expect the same of anyone who has a bee allergy or breathing problem, too. In those cases, label disclosure is extremely important.

Otherwise? People don't necessarily need to know those things, or the other invisible labels I carry. Our view of ourselves is more important than what anyone tells us we "should" be like.

Of course, as my school experiences and the every day experiences of pretty much everyone around the world demonstrate, the way other people react to how they label us can be dangerous. That enters into the worlds of stigma, entitlement, ignorance, and fear.

Way too many people are still mistreated because of the color of their skin, their sexuality, their gender, their disability status, their socioeconomic status, their...well, any other visible label. There are a lot of them.

That's how what the media and our culture as a whole does its damage. Too much of that shameful behavior is reinforced by the news we consume and the things we're taught from a young age. When we see something happen, fear may stop us from intervening, or maybe we agree with it on some level.

While we can't change what other people think or do, we can work on ourselves. We can broaden our own horizons, and learn about what those who fit into misunderstood groups go through on a daily basis. We can listen to their stories, and instead of accusing them of lying or exaggerating, give them the benefit of the doubt. When stories are common enough, there are systemic problems that must be resolved.

What seems to get lost in this whole issue of labels and stigma is that those who carry them are people. We all deal with labels and stigma, even if we don't realize it, and we are all people. The basic experience of being a person, experiencing hunger, fulfillment, thirst, joy, exhaustion, belonging, pain, and all of the other things we all go through on a primal level, is universal.

Why is that simple fact so hard to remember?

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