And now for a topic that everybody loves! INSURANCE!
Aha . . . ahahaha . . . ha . . . ha ha ha . . .
*ahem* Anyway . . .
Insurance is a discussion that nobody likes, but let me tell you why it's an especially difficult conversation for people who are chronically ill.
Work Insurance is Great! . . . When It's There
As if jobs and job hunting and benefits weren't fun enough to worry about and think about, for people with chronic illnesses it can literally be a matter of life and death.
"Isn't that kind of dramatic?" you may ask. "It might be inconvenient, but surely it's not THAT bad."
Well, my friend, it really IS that bad.
Chronically ill people have a hard enough time as it is finding and maintaining work because of their illnesses. Making sure they are covered by insurance just makes it all harder. Part time hours, which are more workable with chronic health challenges, don't always provide benefits. Those benefits are almost always necessary for people with chronic health issues to remain on the healthier side of things. Shots, x-rays, inhalers, epipens, insulin, mood regulatory meds, gut health meds, chemo treatments--all of these things get impossibly expensive ridiculously fast. Many of them START ridiculously expensive. Even with insurance. Not being able to have benefits is devastating for anyone suffering with chronic illnesses.
And we need those things to live. Not want. NEED. A person can die from allergic reactions without epipens. Asthmatics can suffocate without the right inhalants. People with lupus cannot function in the levels of pain they experience without proper treatments.
Places that don't provide insurance are exacerbating the growing health crises that our society is facing. Some people CAN'T work more than part-time hours, nor do they always live with people who can cover them with their own insurance, like parents or spouses. If people can't afford to be healthy, their health won't improve and they will be forever stuck in a spiral of being too ill to work but being too poor to not work.
Even When Insurance is There, It's Not Always There Enough
Okay, so someone with chronic illness thinks they can manage, or they have to learn to manage, a full time job and, yay, it comes with benefits!
Oh wait, those benefits don't start for three months, maybe longer.
In the meantime, how does someone with chronic illness survive? Sometimes they can get several months of medications ahead of time, but sometimes they can't. Do the people who can't stockpile meds deserve to have their health and their lives at risk while waiting for insurance to start? What if their illness takes a turn for the worst and they need more care, sooner? And even if they have the meds, there's still doctors visits and therapists that we need to see regularly. How can we pay for that?
State insurance and government aid are great, but not everywhere accepts them or they only accept specific kinds. And they aren't endless wealth banks. As nice as it is to have alternative aid available, it's not all-powerful.
And Then, Insurance Doesn't Even Cover Everything
Insurance not covering everything goes two ways:
1. Deductibles are murder
2. Not all chronic health challenges are recognized or covered by insurance
I don't know that I need to go too far into the deductible problem (although I will in a future post if it requested!), but the second problem is a REAL problem. While chronic health problems are on the rise, there's still enough stigma and not enough information on a lot of them for them to be considered real problems that insurance should cover. That makes it really, really difficult to afford taking care of them. A lot of insurances also don't cover pre-existing conditions, so there's that.
Then, when insurance does cover them, you have to go through a million tests (which you have to pay at least part of if you're deductible isn't met) for them to make sure that the problem you have is, in fact, the problem you have. If you switch insurances in the middle of this process, you get to start it all over again, paying for it all again. When you're already struggle making ends meet.
Finally, if they can't pinpoint exactly what isn't working, or why it isn't working, all that money is just wasted. Sometimes they can give people things to help the symptoms, but the overall problem going untreated means that you're treating symptoms forever. When that happens, they don't always give out prescriptions and instead suggest over-the-counter or at-home remedies that you have to pay for out of pocket. While on the one hand, it might be nice to worry about prescriptions, on the other hand no prescriptions means completely out-of-pocket expenses.
Overall, Insurance and Chronic Illness Aren't Friends
My dream would be to change the medical world to be less about making money and treating symptoms and more about the actual wellness of the people. It shouldn't be a fight to get necessary medical care just to live. Life shouldn't be a long punishment game; it's plenty hard as it is living on Earth without people making it harder on each other. Insurance companies, while making some things about health easier, also created a nightmare with their policies. Jobs, while kindly providing insurance benefits, are also keeping their employees locked in deathly cycles.
Chronic illnesses don't just magically go away if insurances and jobs don't believe they exist. They're still there and they're still a need to be met. Hopefully, by opening up more discussions about the need for better health care, we can come up with some real solutions that actually help people without making other peoples' lives worse.
As always, comments are welcome!
Cheers~
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub
Friday, December 20, 2019
Friday, December 13, 2019
Chronic Illness and Finding Expression in Media
I'm sorry I didn't get anything out the last couple of weeks! I have been really ill and unable to write (or do a third of the things I wanted to do). But here I am, ready to tackle a new topic related to chronic illness!
A bit of a disclaimer before we start: this is really a pretty big topic with a lot of facets to it. With the time and energy I have, I probably won't be able to do full justice to this topic at this time. However, since I am dedicated to this series of blog posts on chronic illnesses, this is a topic that will most likely feature several times over the course of this blog, and, hopefully, will receive the full attention it deserves. In this post, I will simply do my best to cover as much as I can here.
*metaphorically cracks knuckles* Here we go!
A Word on Media
"Media" is the plural form of "medium." A "medium" is a conduit, a middle ground. In art, "medium" is heard probably more commonly than anywhere else: photography is an art medium, pastel is an art medium, and so on. We tend to talk about "The Media" as an all-encompassing, mostly news and TV oriented feature that gives us information and represents conflicting ideas.
When I speak of "media," I am talking about ALL of the conduits: books, art, TV, video games--all of it.
Media as Conduits of Representation for the Chronically Ill
Overall, there is very little in popular media by way of representing ANY kind of disability, but especially chronic illnesses. Most commonly, you might find cases of dismemberment, blindness, and PTSD, among a few other rarities. While it's great that what gets attention is, in fact, getting attention, it still leaves waaaaaaaay too many disabilities, especially chronic illnesses, underrepresented.
Why is it important to have representation in the media?
Because it allows people to see a reflection of themselves in something, which gives them a new, different perspective on the challenges they're facing or the choices they're making. It also allows people who might not be exposed to those challenges to have a glimpse into the lives of other people, and to see those struggling individuals as real, feeling humans. Think about books: books are well known for being ways of experiencing thousands of different lives different from your own. That is just one example of the power of media to help people understand situations they may never experience themselves. Representation can help you and others build empathy.
But there's more.
Representation is MOST helpful when done in respectful, appropriate ways. Showing chronically ill people as always being miserable, always needing a cure, or always being the focus of an inspirational journey really isn't always helpful. We are NOT all miserable, even in our struggles. There ISN'T always a cure, and even if there is, it's not always possible, plausible, or needed. And while it is totally possible to learn from chronic illness and be inspired by the struggle, most of us are just living ordinary lives around our chronic illnesses.
While we often feel broken, it is actually painful to always be portrayed as broken. We may not be able to live the same lives as other people, but we can still live wonderful, purposeful lives WITH our illnesses. What we need first is for people to love and accept us as we are before trying to say we need to change or be different.
Another facet of media as conduits for representation is the need to show chronically ill and disabled in different lights. It is important to us to see our issues on an extraordinary AND ordinary level.
A superhero with fibromyalgia? How about yes!
An aspiring author with arthritis? How about yes! (I actually know a few people with this particular setup. They are A M A Z I N G~)
A regular house mom with postpartum depression or anxiety? How about yes!
A student who is working through life with chronic fatigue? How about yes!
Very few of us are living extreme lives, so it's good to see us represented in a variety of ways. People can create positive narratives of "these people are living good lives with the problems they live with" instead of heart-wrenching stories of "look how inspirational this person is in overcoming chronic illness" or "they're trapped by this illness and still carry on!" Life with chronic illnesses is what it is. And that's not always a bad or negative thing.
Media as a Tool for Processing and Regulating How We Handle Chronic Illness
There are two main ways that chronically ill people consume media in relation to handling their illnesses:
1. Passive consumption (e.g. watching TV or movies, reading, observing art pieces that speak to us, video games)
2. Active consumption (e.g. cosplaying as characters that we relate to, creating original fiction, creating transformative works, creating art, video games)
Both of these ways are important in the act of processing what we're experiencing.
For myself, I usually participate in passive consumption of media. Reading a book or watching a movie helps me disengage from from my problems and afflictions and lets my subconscious process things without actively having to worry about it. It allows me to escape for a while so I can come back and face things more easily. Personally, I mostly avoid stories that remind me of my problems, but for other people it can be cathartic to read or see how other people handle their same problems, fictionalized or real. It's seeing your life in a mirror without being the one to make the decisions or take the fall. You get the benefit of living vicariously through others while also healing from your pains.
I view active consumption of media as a more head-on approach to processing chronic illness (and other life challenges). To create something, you really have to look at it, acknowledge it, and figure it out. Creation takes your emotions and puts it out to the world, where it has to be looked at and acknowledged. As a child, my sister and I roleplayed an imaginary world where we were able to take all the ugly, awful things that happened to us and turn them and twist them into magical adventures. A lot of what we imagined was pretty dark for a six and twelve year old! But it helped us live in a dark, harsh world without caving in. It can be incredibly empowering to take the things that hurt you or confuse you or just make life difficult, and turn it into something visible, moldable, and that you have control over.
We may not be able to control the situations we're in, but we can control how we handle them through our media consumption. We can find a community we relate to, find self-acceptance and love, and begin to feel a little more human.
On the flip side, immersing yourself too much in media consumption, even if it is healing and helping, can be seriously detrimental. It can be way too easy to be caught up the negative thoughts, feelings, habits, and expressions that you find and express in media. Self-justification ("I see that others have these same problems so it's okay for me to wallow, because it's normal," etc.) or allowing life to fall by the wayside are both really bad things. Making sure that what you put out into the world is put out there in a way that doesn't harm others (commonly done via appropriate tagging) is important.
And so . . .
Media are powerful tools for good, and it's important to be aware of the uses in relation to chronic illnesses, and aware of the negative side-effects that could occur, so that media CAN be used for good. It is important to show people with chronic illnesses in a variety of ways; it helps both the chronically ill and people who aren't chronically ill in understanding themselves and each other. Like any tool, it is how you use it that matters.
Cheers~
Shoutout to my patron Kyle for requesting this topic, and my friend Carissa for helping me find the words for this! You guys rock!
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub/
A bit of a disclaimer before we start: this is really a pretty big topic with a lot of facets to it. With the time and energy I have, I probably won't be able to do full justice to this topic at this time. However, since I am dedicated to this series of blog posts on chronic illnesses, this is a topic that will most likely feature several times over the course of this blog, and, hopefully, will receive the full attention it deserves. In this post, I will simply do my best to cover as much as I can here.
*metaphorically cracks knuckles* Here we go!
A Word on Media
"Media" is the plural form of "medium." A "medium" is a conduit, a middle ground. In art, "medium" is heard probably more commonly than anywhere else: photography is an art medium, pastel is an art medium, and so on. We tend to talk about "The Media" as an all-encompassing, mostly news and TV oriented feature that gives us information and represents conflicting ideas.
When I speak of "media," I am talking about ALL of the conduits: books, art, TV, video games--all of it.
Media as Conduits of Representation for the Chronically Ill
Overall, there is very little in popular media by way of representing ANY kind of disability, but especially chronic illnesses. Most commonly, you might find cases of dismemberment, blindness, and PTSD, among a few other rarities. While it's great that what gets attention is, in fact, getting attention, it still leaves waaaaaaaay too many disabilities, especially chronic illnesses, underrepresented.
Why is it important to have representation in the media?
Because it allows people to see a reflection of themselves in something, which gives them a new, different perspective on the challenges they're facing or the choices they're making. It also allows people who might not be exposed to those challenges to have a glimpse into the lives of other people, and to see those struggling individuals as real, feeling humans. Think about books: books are well known for being ways of experiencing thousands of different lives different from your own. That is just one example of the power of media to help people understand situations they may never experience themselves. Representation can help you and others build empathy.
But there's more.
Representation is MOST helpful when done in respectful, appropriate ways. Showing chronically ill people as always being miserable, always needing a cure, or always being the focus of an inspirational journey really isn't always helpful. We are NOT all miserable, even in our struggles. There ISN'T always a cure, and even if there is, it's not always possible, plausible, or needed. And while it is totally possible to learn from chronic illness and be inspired by the struggle, most of us are just living ordinary lives around our chronic illnesses.
While we often feel broken, it is actually painful to always be portrayed as broken. We may not be able to live the same lives as other people, but we can still live wonderful, purposeful lives WITH our illnesses. What we need first is for people to love and accept us as we are before trying to say we need to change or be different.
Another facet of media as conduits for representation is the need to show chronically ill and disabled in different lights. It is important to us to see our issues on an extraordinary AND ordinary level.
A superhero with fibromyalgia? How about yes!
An aspiring author with arthritis? How about yes! (I actually know a few people with this particular setup. They are A M A Z I N G~)
A regular house mom with postpartum depression or anxiety? How about yes!
A student who is working through life with chronic fatigue? How about yes!
Very few of us are living extreme lives, so it's good to see us represented in a variety of ways. People can create positive narratives of "these people are living good lives with the problems they live with" instead of heart-wrenching stories of "look how inspirational this person is in overcoming chronic illness" or "they're trapped by this illness and still carry on!" Life with chronic illnesses is what it is. And that's not always a bad or negative thing.
Media as a Tool for Processing and Regulating How We Handle Chronic Illness
There are two main ways that chronically ill people consume media in relation to handling their illnesses:
1. Passive consumption (e.g. watching TV or movies, reading, observing art pieces that speak to us, video games)
2. Active consumption (e.g. cosplaying as characters that we relate to, creating original fiction, creating transformative works, creating art, video games)
Both of these ways are important in the act of processing what we're experiencing.
For myself, I usually participate in passive consumption of media. Reading a book or watching a movie helps me disengage from from my problems and afflictions and lets my subconscious process things without actively having to worry about it. It allows me to escape for a while so I can come back and face things more easily. Personally, I mostly avoid stories that remind me of my problems, but for other people it can be cathartic to read or see how other people handle their same problems, fictionalized or real. It's seeing your life in a mirror without being the one to make the decisions or take the fall. You get the benefit of living vicariously through others while also healing from your pains.
I view active consumption of media as a more head-on approach to processing chronic illness (and other life challenges). To create something, you really have to look at it, acknowledge it, and figure it out. Creation takes your emotions and puts it out to the world, where it has to be looked at and acknowledged. As a child, my sister and I roleplayed an imaginary world where we were able to take all the ugly, awful things that happened to us and turn them and twist them into magical adventures. A lot of what we imagined was pretty dark for a six and twelve year old! But it helped us live in a dark, harsh world without caving in. It can be incredibly empowering to take the things that hurt you or confuse you or just make life difficult, and turn it into something visible, moldable, and that you have control over.
We may not be able to control the situations we're in, but we can control how we handle them through our media consumption. We can find a community we relate to, find self-acceptance and love, and begin to feel a little more human.
On the flip side, immersing yourself too much in media consumption, even if it is healing and helping, can be seriously detrimental. It can be way too easy to be caught up the negative thoughts, feelings, habits, and expressions that you find and express in media. Self-justification ("I see that others have these same problems so it's okay for me to wallow, because it's normal," etc.) or allowing life to fall by the wayside are both really bad things. Making sure that what you put out into the world is put out there in a way that doesn't harm others (commonly done via appropriate tagging) is important.
And so . . .
Media are powerful tools for good, and it's important to be aware of the uses in relation to chronic illnesses, and aware of the negative side-effects that could occur, so that media CAN be used for good. It is important to show people with chronic illnesses in a variety of ways; it helps both the chronically ill and people who aren't chronically ill in understanding themselves and each other. Like any tool, it is how you use it that matters.
Cheers~
Shoutout to my patron Kyle for requesting this topic, and my friend Carissa for helping me find the words for this! You guys rock!
https://www.patreon.com/rosejulia
https://www.facebook.com/rosewindhub/
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