Society likes labels. It likes to put us into boxes. Sometimes those boxes overlap like a rectangular Venn diagram. Sometimes they’re similar to someone else’s array of boxes.
A lot of us have complicated relationships with our labels, and I think a lot of that has to do with where the labels come from. I was working on a project recently where someone asked, “I have ____. Does that count as a chronic illness?” I was horrified. Why should anyone else define your condition? If you feel you have a chronic illness, isn’t that enough? And yet, I have seen it happen over and over again. Someone is told they don’t really “belong” in a group.
But labels can also be empowering. They can help us quickly convey something about ourselves to others. They can help us learn about the group that we belong to. And one of the things I find most important: they help us find community.
You’re a queer bisexual woman with a chronic illness too!?! Awesome!!
Yes, I’ve heard myself utter those words. It’s so great to talk to someone I can relate to in multiple ways. I love using certain labels because it helps me find my peeps. Totally cool.
What’s not so cool is when other people choose to label me or anyone else. It’s also not cool when they choose to redefine my labels. I’ve heard people say, “Bisexuals are only interested in threesomes.” When I say that’s not true, they disagree. Um, wouldn’t I, as a bisexual, know that better than you, a monosexual?
I’ve heard people say that if you’re not in a wheelchair then you don’t need to use a ramp. When I try to explain why that’s not true, they don’t want to hear it. They’d rather hold on to their preconceived notions than actually learn they might not be 100% correct about something.
It can be infuriating, that’s for sure. And as someone who has a chronic illness and is bi, I’ve been amazed at how much overlap I have seen in these two communities. Both chronic illnesses and bisexuality are often (though not always) invisible to the casual observer. Often, people pretend we don’t exist, either individually (“you’re dating a man so you must be straight now”) or as a group (“there’s no such thing as fibromyalgia, it’s just a made up condition so the pharmaceutical companies can sell more drugs.”)
People like to throw their labels onto us. As if I don’t know if I have chronic illnesses or not. As if I shouldn’t be allowed to define my own sexual orientation.
We both have our labels misunderstood often. Who hasn’t heard some version of “it’s not like that will kill you” when it really could, or “bisexuals aren’t capable of monogamy because when you’re with someone of one gender you’ll always be missing the other gender”? (This last one has the added bonus of marginalizing anyone who doesn’t fit into the gender binary.)
And let’s not forget the joy of having someone condescendingly explain who we are to us. I won’t even bother with a sample quote because it’s just so heinous.
There’s discrimination, and sometimes it’s based on labels that don’t apply to us but that someone assumes describe us.
Then there’s the joy of having someone argue that the label we choose isn’t “right” in some way. Like being told your condition isn’t really a chronic illness. Or the ever-popular, “I don’t think you’re really bisexual, you’re pansexual.”
But wait! Don’t despair! Because having these labels is also truly awesome!
If I didn’t use the term “chronic illness” how would I have found all of you? We all have such different diagnoses, symptoms, and life situations. I could write a blog about having Hashimoto’s Disease, but I wouldn’t get to talk about Celiac. I could write about Celiac, but what about PCOS? Anyone with a different diagnoses probably wouldn’t bother to read or comment. Using “chronic illness” allows us to all connect, and that’s magical.
I feel the same way about calling myself bi. Sure, it means that sometimes I’m shunned in lesbian spaces. But it also helps me to find other bi folks. It means people don’t look at me askance when I mention that cute girl over there, even though they knew I was dating a guy last year. We can share stories and music and movies and books. We can simply find each other.
And don’t forget the research. The health research around chronic illnesses is probably somewhat familiar to you. But did you know about Bisexual Health Awareness Month? The research around health disparities for bisexual folks is super important, but how could anyone conduct that research unless people self-labeled as bi?
I could go on for days about the similarities in the way labels affect both the CI and bi communities so for now I’ll just say, thank goodness for our labels. Despite all of the problems with them, they’ve help me to find some incredible people, and I’m so grateful for that.
Now, it’s time to go fight some more of those damn stereotypes!
How do you feel about labels? What are some of the labels you apply to yourself? I’d love to hear from you in the comments!
‘Miss’ from when I was teaching or even Mum sometimes. Mum because of my son. Sable’s Mum ( at the vets) When people look at me I would get the label ‘ Fat’ , O f course how we met Chronically Ill. Sometimes labels are the truth it is just how people use them. Hugs xx
That’s so true, Lorna. The same label said in two different ways by two different people can have two totally different meanings.
Because I really don’t like the boxes people so often try to draw around our labels, I made-up my own label: “ADD-ish”.
I’m self-diagnosed, and I won’t use the in-vogue ADHD because I really don’t have any of the “hyper” facets.
“ADD-ish” prompts folk to ask, instead of assume, and gives me a chance to explain: I mean “Attention Difference Difficulties“, and “-ish” because my attention varies wildly, depending on [many, many factors]. …Not necessarily a “deficit”, and certainly not a “disorder”, dammit!
I love the idea of making up our own labels, Karen! I sometimes use vague language if I want someone to ask. I like the idea of adding ‘ish to certain words 🙂
Woo, this is a great topic! As an occupational therapist, I deal with stereotype-busting everyday. For example, chronic illness does not mean that you have to spend the rest of your life in a disabled state of body and mind. The misunderstanding that comes along with a chronic pain diagnosis like fibromyalgia (I’ve heard doctors say that the person is faking it) drives me up a wall! So what can we do? We tackle each one with patience and grace and have the wisdom to just say “screw it” to those who really just refuse to listen. They’re not worth the discussion/argument. And I completely agree that labels can have a positive impact as well in helping us find our brethren, a community, belonging. 🙂
Thanks Damon! And thanks for patiently trying to educate folks. I admit my patients wears thin a lot faster these days than it did 10 or 20 years ago, but there’s definitely a benefit for everyone involved in trying to explain things to people. I still try, I just get to “screw it” a lot more quickly than I used to. I hate to think what stage I’ll be at in another 20 years 😉
Haha! I don’t blame you at all! 🙂