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.

 Ashley Tieperman
10.21.16

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.

relationships friendship chronic illness autoimmune disorder chronic pain sjögren’s syndrome quaker
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Florida city forecloses on man's home after fining him $30,000 for not mowing his lawn.

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Should a man lose his home because the grass in his yard grew higher than 10 inches? The city of Dunedin, Florida seems to think so.

According to the Institute of Justice, which is representing Jim Ficken, he had a very good reason for not mowing his lawn – and tried to rectify the situation as best he could.

In 2014, Jim's mom became ill and he visited her often in South Carolina to help her out. When he was away, his grass grew too long and he was cited by a code office; he cut the grass and wasn't fined.

France has started forcing supermarkets to donate food instead of throwing it away.

But several years later, this one infraction would come back to haunt him after he left to take care of him's mom's affairs after she died. The arrangements he made to have his grass cut fell through (his friend who he asked to help him out passed away unexpectedly) and that set off a chain reaction that may result in him losing his home.

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Michelle Obama named 'most admired woman in the world,' because of course she is.

The world can't get enough Michelle.

Jimmy Kimmel Live/YouTube

The world officially loves Michelle Obama.

The former first lady has overtaken the number one spot in a poll of the world's most admired women. Conducted by online research firm YouGov, the study uses international polling tools to survey people in countries around the world about who they most admire.

In the men's category, Bill Gates took the top spot, followed by Barack Obama and Jackie Chan.

In the women's category, Michelle Obama came first, followed by Oprah Winfrey and Angelina Jolie. Obama pushed Jolie out of the number one spot she claimed last year.

Unsurprising, really, because what's not to love about Michelle Obama? She is smart, kind, funny, accomplished, a great dancer, a devoted wife and mother, and an all-around, genuinely good person.

She has remained dignified and strong in the face of rabid masses of so-called Americans who spent eight years and beyond insisting that she's a man disguised as a woman. She's endured non-stop racist memes and terrifying threats to her family. She has received far more than her fair share of cruelty, and always takes the high road. She's the one who coined, "When they go low, we go high," after all.

She came from humble beginnings and remains down to earth despite becoming a familiar face around the world. She's not much older than me, but I still want to be like Michelle Obama when I grow up.

Her memoir, Becoming, may end up being the best-selling memoir of all time, having already sold 10 million copies—a clear sign that people can't get enough Michelle, because there's no such thing as too much Michelle.

Don't like Michelle Obama? Don't care. Those of us who love her will fly our MO flags high and without apology, paying no mind to folks with cold, dead hearts who don't know a gem of a human being when they see one. There is nothing any hater can say or do to make us admire this undeniably admirable woman any less.

When it seems like the world has lost its mind—which is how it feels most days these days—I'm just going to keep coming back to this study as evidence that hope for humanity is not lost.

Here. Enjoy some real-life Michelle on Jimmy Kimmel. (GAH. WHY IS SHE SO CUTE AND AWESOME. I can't even handle it.)

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France has started forcing supermarkets to donate food instead of throwing it away.

via EarthFix / Flickr

What will future generations never believe that we tolerated in 2019?

Dolphin and orca captivity, for sure. They'll probably shake their heads at how people died because they couldn't afford healthcare. And, they'll be completely mystified at the amount of food some people waste while others go starving.

According to Biological Diversity, "An estimated 40 percent of the food produced in the United States is wasted every year, costing households, businesses and farms about $218 billion annually."

There are so many things wrong with this.

First of all it's a waste of money for the households who throw out good food. Second, it's a waste of all of the resources that went into growing the food, including the animals who gave their lives for the meal. Third, there's something very wrong with throwing out food when one in eight Americans struggle with hunger.

Supermarkets are just as guilty of this unnecessary waste as consumers. About 10% of all food waste are supermarket products thrown out before they've reached their expiration date.

Three years ago, France took big steps to combat food waste by making a law that bans grocery stores from throwing away edible food.According to the new ordinance, stores can be fined for up to $4,500 for each infraction.

Previously, the French threw out 7.1 million tons of food. Sixty-seven percent of which was tossed by consumers, 15% by restaurants, and 11% by grocery stores.

This has created a network of over 5,000 charities that accept the food from supermarkets and donate them to charity. The law also struck down agreements between supermarkets and manufacturers that prohibited the stores from donating food to charities.

"There was one food manufacturer that was not authorized to donate the sandwiches it made for a particular supermarket brand. But now, we get 30,000 sandwiches a month from them — sandwiches that used to be thrown away," Jacques Bailet, head of the French network of food banks known as Banques Alimentaires, told NPR.

It's expected that similar laws may spread through Europe, but people are a lot less confident at it happening in the United States. The USDA believes that the biggest barrier to such a program would be cost to the charities and or supermarkets.

"The logistics of getting safe, wholesome, edible food from anywhere to people that can use it is really difficult," the organization said according to Gizmodo. "If you're having to set up a really expensive system to recover marginal amounts of food, that's not good for anybody."

Plus, the idea may seem a little too "socialist" for the average American's appetite.

"The French version is quite socialist, but I would say in a great way because you're providing a way where they [supermarkets] have to do the beneficial things not only for the environment, but from an ethical standpoint of getting healthy food to those who need it and minimizing some of the harmful greenhouse gas emissions that come when food ends up in a landfill," Jonathan Bloom, the author of American Wasteland, told NPR.

However, just because something may be socialist doesn't mean it's wrong. The greater wrong is the insane waste of money, damage to the environment, and devastation caused by hunger that can easily be avoided.

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