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A request from your chronically ill friend: what I need when we talk about my sickness.

When I meet new people, I often struggle to explain what I need. This is it.

When I was 14, I woke up with a fat face.

I was sick with a fever higher than I had ever felt. My face felt like a sumo wrestler had crammed a cantaloupe into my ear.

My mom took me to the emergency room in the closest town to our family’s remote lake house in North Carolina. Receptionists shooed me in, nurses injected butt shots, and doctors gave me doe-eyed stares. They had no idea what was wrong with me.

Photo via iStock.

This routine of waking up suddenly sick, with a fat face and a spiked fever, continued for years.

Finally, when I was 16, doctors handed me a diagnosis and a pill regimen and told me I might be sick forever.

I was young enough that my pediatric doctor called to give my mom the diagnosis over the phone. The most dramatic part happened before the diagnosis, though, when they told my mom that they had somehow lost my eight vials of blood (which had taken hours of sweat and tears and people holding me down to get). Otherwise, the phone call was short and I could hear the words through the phone my mom held up to her ear.

“I’m so sorry,” the pediatric doctor said to my mom. As if we knew anything about an autoimmune disorder called Sjögren’s syndrome, with hallmark symptoms of dry eyes and a dry mouth, and why we should possibly join the doctor in feeling sad.

Now, more than 10 years later, I’m living fairly well with this autoimmune disorder.

But still, when I meet new people, I struggle with how to explain what I need. Part of my introduction to new people has to include these words: “I’m sick.” And that’s not easy.

So hello, new friend. Here’s what I need you to try to understand when we talk about my life with a chronic illness:

1. I need you to let me have my green couch moments.

After that first day at the hospital in North Carolina, they sent me home without answers and I slept on the green couch at my family’s lake house for days. I remember feeling sad, watching my cousins jump off the diving board at the end of the dock.

Photo via iStock.

But I mostly remember feeling sad about how my family looked at me. They all had the saddest eyes, like they knew something about my future that I couldn’t comprehend at the age of 14.

For some reason, I’ve continued to have a lot of different green couches over the years in various houses and apartments. Sometimes when my sickness takes over, I have to spend days — or weeks — recovering on my green couch. I need you to let me stay there to rest and wait for Netflix to ask me, “Are you still watching 'Friends'?”

2. I need you to show up.

No one knows what tomorrow holds. But if my tomorrow puts me in the hospital, I need you to come. I need you to show up. Sure, you can bring me flowers, but I really just need you to be there at my bedside, hanging out.

In high school, when my hospital visits lasted for 12 or 14 days of sucking on lemons in the pediatric wing to trigger my salivary glands and going for walks wheeling my IV bag, I remember the friends who showed up. And I remember the friends who only came after my parents bribed them to sit with me for a couple hours so they could go home to shower.

People were afraid. I get it. I was afraid, too.

3. I need you to stop asking why doctors can’t fix me.

The autoimmune disorder that I have is chronic, meaning there isn’t a cure, just like many other people in the world with chronic illnesses. I know it’s confusing — you come down with a cough and you go to the doctor to get better.

For me, it’s not that simple. I take a couple of medications that help tackle my individual symptoms and improve my quality of life with pain management, but that’s it. That’s all doctors can do at this point.

Please stop asking why. Doctors don’t know. I don’t know.

4. I need you to try to see my invisible pain.

All those years when I woke up with a fat face were just my invisible illness trying to make a guest appearance for one episode. Mostly, my body suffers in ways that you can’t see.

Photo via iStock.

The more visible symptoms happen in cold weather when the blood rushes away from my hands and feet. This is when you watch in amazement because my white hands look like a dead person’s. I need you to know that the invisible pain hurts just as bad as the visible pain.

5. I need you to stop asking me how I feel today.

Some days, it’s a big deal to just get out of bed because my joints ache and after even 10 hours of sleep, I still feel like I have a hangover. My right foot and my back feel broken, and my dry eyes build a white film on my contacts that feels like I’m watching the world through a dirty fish bowl.

When you ask me how I feel today, the answer is complicated. The list of pain that’s both inflamed or subsided is longer than we need to hash out. And sometimes the answer to your questions makes me sad, grieving the loss of a dream of a pain-free life I think I deserve.

6. I need you to let me weep in my mom’s arms, even as a grown adult.

Next month, I turn 27. Recently, I wept in my mom’s arms in a shaking way that startled even me. It was the day I got another doctor’s bill for hundreds that I couldn’t afford, and I wasn’t sure if I could even go to my specialist appointment because it might mean I couldn’t pay rent or buy groceries for a couple of months.

My health insurance doesn’t get it. They cover so little, deeming appointments and blood work as “medically unnecessary.” But truthfully, nothing about this sick life is easy to handle, even as a pretty independent adult. I need you to let me weep from the deepest places and not tell me to just shake it off.

7. I need you to stop telling me I can’t.

I told my parents I wanted to go on a mission trip to Africa. Instantly, they said, “You can’t.”

I’ve heard these words before, about studying abroad or becoming an elementary school teacher, with planes and buildings and countries with germs lurking behind every corner. Their advice comes from places of love. But I can’t have you joining in on this whole “You can’t” chant.

Until a doctor gives a definite “No, you can’t do that or go there,” then I need you to invite me to go places. I need you to challenge me and dream with me.

8. I need you to let me be stubborn.

I have a cousin who’s searching for a diagnosis for something autoimmune right now. My biggest prayer for her is that she stays stubborn, even after she knows she’s sick. She studied abroad before she got sick, before anyone tried to tell her she can’t.

The last couple of years, I moved to a new time zone, even when some told me I couldn’t. You might get to know me now and want to protect me in a plastic bubble everywhere we go. Please don’t. If you’re planning a trip somewhere exotic, invite me. I’ll tell you if it’s too much.

Photo via iStock.

Let me wrestle in the dark with my own stubbornness, just like when I was a little girl and insisted on riding my new bike with shiny tassels on the very first night, even though it was too big and pitch dark outside. I might fall down and get hurt, but I promise you I’ll learn from stubbornly ditching the training wheels in the dark.

9. I need you to tell me to stop staring at that hospital waiting in the sky.

I live in Dallas with a clear view to Baylor hospital in the skyline. Sometimes, while I’ve sat by the pool at my apartment, I’ve caught myself staring for too long at the hospital waiting in the sky for my future arrival.

You might be familiar with how we tell the “sick narrative”: sick, sicker, dying, gone. I have a higher risk of lymphoma and other complications, but this doesn’t mean that’s definitely how my story will end.

So if you catch me anxiously staring at my scripted future, stop me. I need you to remind me that the story can twist in so many directions, especially with technology and modern medicine that completely shatter traditional death sentences.

10. I need you to let me change the world today. Now.

The best (and worst) part about being sick: It moves me into action. I don’t have time to wait. I probably quit jobs sooner than you would or chase after dreams in frantic ways while you put yours on the back burner. I also don’t have time to waste.

It’s scary and exciting all wrapped into one. I need you to help me figure out how little me plays a part in this big story. Let me fight for things that matter today because tomorrow is just a gift.

11. I need you to love me like the 80-year-old grandma I am.

I’ve finally found a pill box that fits all the vitamins and medications that I need to sort out for designated times each day. My dream night is one cozied up and warm on the couch, followed by a 9:30 bedtime. Sjögren’s means I don’t produce enough tears, but if I did, I would cry while laughing at how many times I have to go to the bathroom because of all the water I have to drink to stay hydrated.

Yes, me and your 80-year-old grandma probably have more in common than you and I do. I’ve completely accepted this fact. Especially since I’ve been 80 since I was 16.

So love me like a grandma! Stop inviting me out to all-nighters and saying it’s so funny how I go to bed early and love warm socks. It’s not funny or cute. It’s who I am.

My autoimmune disorder is in no way categorized as “the worst.”

Believe me, people suffer every day with far worse, much more incurable diseases than mine. Some days, my illness feels mostly annoying, like an accessory I carry around and must remember to bring with me when I leave the house.

But I hope you will one day meet one of my best friends, a woman who has learned to love me and my sickness. She remembers little details, like how I lack the saliva required to eat dry pretzels filled with dry peanut butter. She figures out how to eat each pretzel with a huge swig of water so I won’t choke, and she does it with me, too. Together, we laugh.

She sits with me on the green couch for Netflix marathons when I’m sick. And together, we cry.

That’s what I want, what I need, and what I want you to know about me, friend: W​e all have our stuff, and this is mine.

Science

MIT’s trillion-frames-per-second camera can capture light as it travels

"There's nothing in the universe that looks fast to this camera."

Photo from YouTube video.

Photographing the path of light.

A new camera developed at MIT can photograph a trillion frames per second.

Compare that with a traditional movie camera which takes a mere 24. This new advancement in photographic technology has given scientists the ability to photograph the movement of the fastest thing in the Universe, light.

The actual event occurred in a nano second, but the camera has the ability to slow it down to twenty seconds.

time, science, frames per second, bounced light

The amazing camera.

Photo from YouTube video.

 For some perspective, according to New York Times writer, John Markoff, "If a bullet were tracked in the same fashion moving through the same fluid, the resulting movie would last three years."


In the video below, you'll see experimental footage of light photons traveling 600-million-miles-per-hour through water.

It's impossible to directly record light so the camera takes millions of scans to recreate each image. The process has been called femto-photography and according to Andrea Velten, a researcher involved with the project, "There's nothing in the universe that looks fast to this camera."

(H/T Curiosity)


This article originally appeared on 09.08.17

From Your Site Articles
science
Health

Her mother doesn't get why she's depressed. So she explains the best way she knows how.

Sabrina Benaim eloquently describes what it's like to be depressed.

via Button Poetry/YouTube

Sabrina Benaim's “Explaining My Depression to My Mother."

Sabrina Benaim's “Explaining My Depression to My Mother" is pretty powerful on its own.

But, in it, her mother exhibits some of the most common misconceptions about depression, and I'd like to point out three of them here.

Misconception #1: Depression is triggered by a single event or series of traumatic events.

empathy, human condition, humanity

Depression isn’t just over sleeping.

Most people think depression is triggered by a traumatic event: a loved one dying, a job loss, a national tragedy, some THING. The truth is that depression sometimes just appears out of nowhere. So when you think that a friend or loved one is just in an extended bad mood, reconsider. They could be suffering from depression.

Misconception #2: People with depression are only sad.

family, parents, mom, anxiety

The obligation of anxiety.

Most people who have never experienced depression think depression is just an overwhelming sadness. In reality, depression is a complex set of feelings and physical changes in the body. People who suffer from depression are sad, yes, but they can also be anxious, worried, apathetic, and tense, among other things.

Misconception #3: You can snap out of it.

button poetry, medical condition, biological factors

Making fun plans not wanting to have fun.

The thing with depression is that it's a medical condition that affects your brain chemistry. It has to do with environmental or biological factors first and foremost. Sabrina's mother seems to think that if her daughter would only go through the motions of being happy that then she would become happy. But that's not the case. Depression is a biological illness that leaks into your state of being.

Think of it this way: If you had a cold, could you just “snap out of it"?

No? Exactly.

empathy, misconceptions of depression, mental health

Mom doesn’t understand.

via Button Poetry/YouTube

These are only three of the misconceptions about depression. If you know somebody suffering from depression, you should take a look at this video here below to learn the best way to talk to them:

This article originally appeared on 11.24.15

From Your Site Articles
depression
Education

Expert says there's only one laundry cycle you ever need, no matter what's being washed

Straight from Patric Richardson, the "Laundry Guy" himself.

Representative image from Canva

Because who can keep up with which laundry settings is for which item, anyway?

Once upon a time, our only option for getting clothes clean was to get out a bucket of soapy water and start scrubbing. Nowadays, we use fancy machines that not only do the labor for us, but give us free reign to choose between endless water temperature, wash duration, and spin speed combinations.

Of course, here’s where the paradox of choice comes in. Suddenly you’re second guessing whether that lace item needs to use the “delicates” cycle, or the “hand wash” one, or what exactly merits a “permanent press” cycle. And now, you’re wishing for that bygone bucket just to take away the mental rigamarole.

Well, you’re in luck. Turns out there’s only one setting you actually need. At least according to one laundry expert.

While appearing on HuffPost’s “Am I Doing It Wrong?” podcast, Patric Richardson, aka The Laundry Evangelist, said he swears by the “express” cycle, as “it’s long enough to get your clothes clean but it’s short enough not to cause any damage.”

Richardson’s reasoning is founded in research done while writing his book, “Laundry Love,” which showed that even the dirtiest items would be cleaned in the “express” cycle, aka the “quick wash” or “30 minute setting.”


Furthermore the laundry expert, who’s also the host of HGTV’s “Laundry Guy,” warned that longer wash settings only cause more wear and tear, plus use up more water and power, making express wash a much more sustainable choice.

Really, the multiple settings washing machines have more to do with people being creatures of habit, and less to do with efficiency, Richardson explained.

“All of those cycles [on the washing machine] exist because they used to exist,” he told co-hosts Raj Punjabi and Noah Michelson. “We didn’t have the technology in the fabric, in the machine, in the detergent [that we do now], and we needed those cycles. In the ’70s, you needed the ‘bulky bedding’ cycle and the ‘sanitary’ cycle ... it was a legit thing. You don’t need them anymore, but too many people want to buy a machine and they’re like, ‘My mom’s machine has “whitest whites.”’ If I could build a washing machine, it would just have one button — you’d just push it, and it’d be warm water and ‘express’ cycle and that’s it.”
washing machine

When was the last time you washed you washing machine? "Never" is a valid answer.

Canva

According to Good Housekeeping, there are some things to keep in mind if you plan to go strictly express from now on.

For one thing, the outlet recommends only filling the machine halfway and using a half dose of liquid, not powder detergent, since express cycles use less water. Second, using the setting regularly can develop a “musty” smell, due to the constant low-temperature water causing a buildup of mold or bacteria. To prevent this, running an empty wash on a hot setting, sans the detergent, is recommended every few weeks, along with regularly scrubbing the detergent drawer and door seal.

Still, even with those additional caveats, it might be worth it just to knock out multiple washes in one day. Cause let’s be honest—a day of laundry and television binging sounds pretty great, doesn’t it?

To catch even more of Richardson’s tips, find the full podcast episode here.


This article originally appeared on 2.4.24

community
Pop Culture

A comic about wearing makeup goes from truthful to weird in 4 panels.

A hilariously truthful (and slightly weird) explanation of the "too much makeup" conundrum.

Image set by iri-draws/Tumblr, used with permission.

A comic shows the evolution or devolution from with makeup to without.

Even though I don't wear very much makeup, every few days or so SOMEONE...

(friends, family, internet strangers)

...will weigh in on why I "don't need makeup."

Now, I realize this is meant as a compliment, but this comic offers a hilariously truthful (and slightly weird) explanation of the "too much makeup" conundrum.

social norms, social pressure, friendship, self esteem

“Why do you wear so much makeup?"

Image set by iri-draws/Tumblr, used with permission.

passive aggressive, ego, confidence, beauty

“See, you look pretty without all that makeup on."

Image set by iri-draws/Tumblr, used with permission.

expectations, beauty products, mascara, lipstick

“Wow you look tired, are you sick?"

Image set by iri-draws/Tumblr, used with permission.

lizards, face-painting, hobbies, hilarious comic

When I shed my human skin...

Image set by iri-draws/Tumblr, used with permission.

Not everyone is able to turn into a badass lizard when someone asks about their face-painting hobbies. Don't you kinda wish you could? Just to drive this hilarious comic all the way home, here are four reasons why some women* wear makeup:

*Important side note: Anyone can wear makeup. Not just women. True story.

Four reasons some women* wear makeup:

1. Her cat-eye game is on point.

mascara, eyes, confidence

Her cat-eye game is on point.

Via makeupproject.

2. She has acne or acne scars.

acne, cover up, scarring, medical health

She has acne or acne scars.

Via Carly Humbert.

3. Pink lipstick.

lipstick, beauty products, basics, self-expression

Yes, pink lipstick.

Via Destiny Godley

4. She likes wearing makeup.

appearance, enhancement, creative expression

Happy to be going out and feeling good.

Happy Going Out GIF by Much.

While some people may think putting on makeup is a chore, it can be really fun! For some, makeup is an outlet for creativity and self-expression. For others, it's just a way to feel good about themselves and/or enhance their favorite features.

That's why it feels kinda icky when someone says something along the lines of "You don't need so much makeup!" Now, it's arguable that no one "needs" makeup, but everyone deserves to feel good about the way they look.

For some people, feeling good about their appearance includes wearing makeup. And that's totally OK.


This article originally appeared on 05.28.15

From Your Site Articles
Joy

Adorable 'Haka baby' dance offers a sweet window into Maori culture

Stop what you're doing and let this awesomeness wash over you.

@focuswithdan/TikTok

If you've never seen a Maori haka performed, you're missing out.

The Maori are the indigenous peoples of New Zealand, and their language and customs are an integral part of the island nation. One of the most recognizable Maori traditions outside of New Zealand is the haka, a ceremonial dance or challenge usually performed in a group. The haka represents the pride, strength, and unity of a tribe and is characterized by foot-stamping, body slapping, tongue protrusions, and rhythmic chanting.

Haka is performed at weddings as a sign of reverence and respect for the bride and groom and are also frequently seen before sports competitions, such as rugby matches.


The intensity of the haka is the point. It is meant to be a show of strength and elicit a strong response—which makes seeing a tiny toddler learning to do it all the more adorable.

Here's an example of a rugby haka:

Danny Heke, who goes by @focuswithdan on TikTok, shared a video of a baby learning haka and omigosh it is seriously the most adorable thing. When you see most haka, the dancers aren't smiling—their faces are fierce—so this wee one starting off with an infectious grin is just too much. You can see that he's already getting the moves down, facial expressions and all, though.

@focuswithdan When you grow up learning haka! #haka #teachthemyoung #maori #māori #focuswithdan #fyp #foryou #kapahaka ♬ original sound - 𝕱𝖔𝖈𝖚𝖘𝖂𝖎𝖙𝖍𝕯𝖆𝖓

As cute as this video is, it's part of a larger effort by Heke to use his TikTok channel to share and promote Maori culture. His videos cover everything from the Te Reo Maori language to traditional practices to issues of prejudice Maori people face.

Here he briefly goes over the different body parts that make up haka:

@focuswithdan

♬ Ngati - Just2maori

This video explains the purerehua, or bullroarer, which is a Maori instrument that is sometimes used to call rains during a drought.

@focuswithdan Reply to @illumi.is.naughty Some tribes used this to call the rains during drought 🌧 ⛈ #maori #māori #focuswithdan #fyp ♬ Pūrerehua - 𝕱𝖔𝖈𝖚𝖘𝖂𝖎𝖙𝖍𝕯𝖆𝖓

This one shares a demonstration and explanation of the taiaha, a traditional Maori weapon.

@focuswithdan Reply to @shauncalvert Taiaha, one of the most formidable of the Māori Weaponry #taiaha #maori #māori #focuswithdan #fyp #foryou ♬ original sound - 𝕱𝖔𝖈𝖚𝖘𝖂𝖎𝖙𝖍𝕯𝖆𝖓

For another taste of haka, check out this video from a school graduation:

@focuswithdan When your little cuzzy graduates and her school honours her with a haka #maori #māori #haka #focuswithdan #fyp #graduation @its_keshamarley ♬ Te Kura Kaupapa Māori o Ngāti Ruanui - 𝕱𝖔𝖈𝖚𝖘𝖂𝖎𝖙𝖍𝕯𝖆𝖓

Heke even has some fun with the trolls and racists in the comments who try to tell him his culture is dead (what?).

@focuswithdan Credit to you all my AMAZING FOLLOWERS! #focuswithdan #maori #māori #followers #fyp #trolls ♬ original sound - sounds for slomo_bro!

Unfortunately, it's not just ignorant commenters who spew racist bile. A radio interview clip that aired recently called Maori people "genetically predisposed to crime, alcohol, and underperformance," among other terrible things. (The host, a former mayor of Auckland, has been let go for going along with and contributing to the caller's racist narrative.)

@focuswithdan #newzealand radio in 2021 delivering racist commentaries 🤦🏽‍♂️ #māori #maori #focuswithdan #racism DC: @call.me.lettie2.0 ♬ original sound - luna the unicow

That clip highlights why what Heke is sharing is so important. The whole world is enriched when Indigenous people like the Maori have their voices heard and their culture celebrated. The more we learn from each other and our diverse ways of life, the more enjoyable life on Earth will be and the better we'll get at collaborating to confront the challenges we all share.


This article originally appeared on 01.28.21

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indigenous people
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