Tag: Chronic Illness

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What Is…Person-First Language?

Some terms are criticized as social justice jargon. However, many of these terms are important to know about and understand. One such term is person-first language.

Person-first language puts a person before the label, which is often a diagnosis of a disability or a chronic illness. This stands in contrast with what one may call identity-first language, which puts the identity before the person without necessarily denying someone their personhood.

To show an example of how person-first language works (especially in contrast to identity-first language), my friend Joe has a learning disability.[1] When you use person-first language, you are talking about “Joe, who has a learning disability.” In contrast, with identity-first language, you are talking about “my learning-disabled friend Joe.” Here, the person-first language puts Joe before his label of having a learning disability, while the identity-first language puts his learning disability before his name.

The person-centered nature of person-first language (which I know sounds redundant) is why it is so popular among some. However, I offer a huge caveat: not everybody, even in the disability or chronic illness communities, prefers person-first language. As such, while it may be favored by some (including Joe, by the way), you shouldn’t assume that just because one friend with a chronic illness or a disability prefers person-first language means all people with chronic illnesses or disabilities prefer it.[2] In fact, since I’ve started getting more active in blogging and on social media, I’ve known some chronic illness and disability advocates who vocally express their desire not to use person-first language for them, for various reasons.

So, then, what should we do if some people prefer person-first language while others do not? Personally, I would strongly advocate listening to and prioritizing the desires of the individual you are with. In the case of my friend Joe, prioritizing the desires of the individual I am with means using person-first language. For a few of the aforementioned bloggers and social media people I have learned from, it might involve using something that’s not person-first language. But regardless of what those preferences are, what is important is to listen to the preferences of the family member, friend, coworker, or acquaintance (and if you’re not sure, asking that person). After all, it is that person who has experience with the disability or chronic illness they have, and it seems wisest to defer to the language we use for the person with that experience instead of imposing our own wishes and ideas upon others.

[1] Don’t worry; I got my friend’s permission to use his name here.

[2] Also, just as a general principle, I urge against the notion of thinking that any one person represents an entire group, whether that group is based on disability, race, religion, gender identity, or anything else.

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What Is…Toxic Positivity?

Today’s post is the next installment in the “What is _____?” series, where I go over terms used commonly in social justice circles that may sound like jargon to some.

Today’s “What is_____?” post will focus on a term that I’ve started to hear more about in the mental health and chronic illness communities: toxic positivity. It’s a term that I think is particularly relevant right now during this coronavirus pandemic, hence the reason for publishing this post today, rather than waiting until later during this series.

Toxic positivity is when there is a focus on positive things and positive thinking while, at the same time, rejecting or minimizing emotions that aren’t happy or positive. Examples of toxic positivity can include phrases and sentiments such as “don’t worry so much,” “it’ll be fine” (especially if it’s something chronic or serious that won’t 100% heal), “just think positive,” and “don’t worry, be happy.” Phrases like these, while not ill-intended, can come across as trying to minimize, invalidate, or suppress negative emotions, which is why the positivity is toxic.

It is especially problematic to suppress the negative when you’re living in a time like the coronavirus pandemic. There are times when suppressing the negative is equivalent to suppressing reality. And now is one of those times when to me, at least, suppressing the negative is equivalent to suppressing reality, because reality is that we have suffered great losses in New York City and not even attempts to suppress the negative would take away that reality.

You might be wondering, though, how to avoid this well-intended, yet toxic, positivity. I’ve heard different takes on this, but here’s mine, for the time being: instead of trying to suppress negative thoughts, show empathy. Instead of suppressing the sadness of a friend who just found out about a close relative passing away, try to be sympathetic to what the friend or family member is going through. Instead of trying to tell others not to worry, be a listening ear when they do worry. Instead of telling others to “just think positive,” be willing to talk through the negative emotions if your friend wants to talk through such feelings with you.

In many if not most cases (at least in my experience), people who struggle with toxic positivity genuinely want to help their friend, their family member, or their neighbor. However, there are times when positivity at the expense of minimizing negative emotions is not the best way to go about things, and that empathy is the best course of action, in my assessment. That being said, if any of my readers have alternates to toxic positivity that I didn’t mention here (because there are different takes on toxic positivity and the alternatives to it), or any thoughts on the topic of toxic positivity, I welcome the suggestions and feedback!

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Who Is…a Spoonie?

When I first heard anyone refer to themselves as a spoonie, I was, needless to say, confused. I thought of spoons as tools to use for eating a lot of our food, not for something we called ourselves.

I would learn later on that the people who called themselves spoonies were people whose experiences with chronic illness (whether physical or mental) could be described with this thing called spoon theory.

But what is spoon theory?

Spoon theory, a term first coined by Christine Miserandino when describing her experience with lupus, is a shorthand for describing how, because of someone’s illness or disability, they have a very limited amount of physical and/or mental energy to do tasks throughout the day (in other words, a very limited number “spoons”) before they are just unable to do any more tasks.[1] For example, let’s say that you have only twelve spoons for the day based on how you feel and how much energy you have, and driving to and from work is three spoons, cooking for the family is four spoons, and work itself is three spoons. That leaves you with only two spoons, and that’s before we’ve even gotten to hygiene, housecleaning, taking care of any pets, laundry, or any other of the basic day-to-day tasks that many of us may take for granted (before we even get to socializing with friends or anything like that).

This shorthand spoon theory is supposed to help people who don’t have that shared spoonie experience (like me) understand that people with many illnesses have limited energy to do the tasks they need to do, let alone the tasks they’d like to do. Through having that understanding of spoon theory and the experiences of spoonies, some of us, particularly those of us who (like me) don’t have that shared experience of living with a chronic illness or other disability, can become more understanding of our friends and family members who do have a variety of illnesses or disabilities. Learning about spoon theory has certainly helped me become more understanding of friends whose day-to-day experiences with various illnesses or disabilities could be described with spoon theory.

All that being said, I would be interested in hearing from any friends or other readers who have experiences with various chronic illnesses and disabilities. Do you, as well, find it helpful for able-bodied people to have an understanding of spoon theory, particularly as it relates to your illness? If you don’t find it helpful in your case, why not? I know that not all illnesses are the same, so I’m interested in hearing from people who have a variety of illnesses, whether it relates to physical health, mental health, or both.

[1] In this piece, Miserandino also explains how spoon theory works: https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf