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chronic illness

It’s that time of year again.

There’s a lot I love about this season — the colorful light displays in my neighborhood; holiday music (well, most of it); and my own little traditions, like celebrating both Hanukkah and Christmas.

It’s also a hard time of year for me, and so I thought I’d write a holiday letter, but not the usual “here’s-what-I-did-this-year” kind. Instead, I’d like to share some of my thoughts about being chronically ill during the holidays.

This way, you’ll understand better what this season is like for me and, hopefully, all of us will have a better time.

I know this time of year is, at times, stressful for everyone.

Expectations can get out of hand, leading to disappointment, crankiness, and sometimes a bad case of the holiday blues. The odds are high that at some point, you’ll feel exhausted from having too much to do and too little time in which to do it.

I also know that some of you have memories that give rise to sadness during the holidays. I certainly do — memories that have nothing to do with the current state of my health.

This a mixed-bag time of year for many of us. I want you to know that I know I don’t have a monopoly on stress and frustration and sadness simply because I’m chronically ill. That said, I have some thoughts on my experience that I'd like to share.

1. I wish my health didn’t have to be an issue during the holidays.

It feels as if it should be a private matter, especially at a time of celebration. It can be uncomfortable — even embarrassing — to talk about my health.

Unfortunately, I don’t always have the luxury of staying silent. I have to share some of my needs and limitations with you or the holidays will be a disaster for me: I’ll burn out fast and not be able to keep company with anyone for the duration.

2. Although I’m doing my best to enjoy our time together, I may be in physical pain or feeling quite sick.

Such is the nature of invisible pain and illness: What you see does not necessarily reflect how I’m feeling. Please don’t misinterpret why I might not be as animated or active as my appearance would indicate I should be. It lifts my spirits to try to look nice, so I’ll be doing my best to dress in the spirit of the holidays.

And if I suddenly disappear for a while, I hope you’ll understand that it’s out of necessity, not choice. I’m just resting.

3. This is a particularly hard time of year for me because it brings into focus just how limited my life has become.

Every year, I have to accept anew my inability to travel or even attend holiday parties that are nearby.

I also can’t shop the way I’d like to. I used to love wandering through small, locally-owned shops, waiting for just the right treasure to catch my eye. Part of the fun was unexpectedly running into friends and acquaintances I hadn’t seen for a long time.

Now, all my shopping is done online. I know that lots of people shop online these days, but now, it's my only option.

4. Though I can't do everything you'll be doing, I don't want you to cancel plans just because I can't participate.

You'll be going to holiday parties, maybe out to dinner and a movie or driving around at night to see the holiday lights, and I'm glad! I want you to have a great time this holiday season. I'll feel much better about the effect this chronic illness has had on our relationship if you don’t cancel plans just because I can’t come along.

So, please, do things that are fun! If you go out to dinner, you can always bring me take-out.

5. It feels incredibly good when you acknowledge that it's hard for me to be chronically ill.

I don’t need much of an acknowledgement of how difficult the holiday season can be for me — just a pat on the shoulder or a short comment, such as “I’m sorry; I know this must be tough for you.” It makes me feel understood, which is something everyone wants in life.

If I’m aware of some difficulties you’re facing — health or otherwise — I promise I’ll try to remember to reach out to you in the same way.

I love all of you and hope your holidays are fun and filled with joy!

This story originally appeared in Psychology Today and has been reprinted here with permission.

Family

This high school senior is looking ahead, and her sickle cell disease won't hold her back.

True

At first blush, LaTia Bell is just like any other high school senior.

She likes school, especially science, and keeps her grades up with college applications just around the corner. She just started playing tennis, and in her free time, she likes to read books and learn about sharks — her favorite animal. Like most other students in the U.S., the pressure is on to keep up, stand out, and excel as competition to gain college admission continues to grow more fierce.

What you can't see is that LaTia, despite all of her work ethic and enthusiasm, is chronically fatigued all the time.

When it's cold — and even sometimes when it's not — her entire body is wracked with pain. She misses weeks of school at a time in the hospital. Even though she strives to be like any other girl, LaTia's sickle cell disease prevents that from being possible.

All photos courtesy of LaTia Bell, used with permission.

Sickle cell disease is a blood disorder that can, to put it bluntly, make life hellish.

“It seems I always get sick around the most important dates,” LaTia says, talking about her sickle cell disease like it’s a mischievous imp rather than a painful and difficult disease. “Usually when I’m sick, I miss at least three days of school. So it is really hard.”

Sickle cell disease is a genetic disorder that prevents a person’s red blood cells from becoming flexible, round, and healthy. Instead, they become rigid and crescent-shaped, unable to carry the amount of oxygen the body needs and dying off much faster than healthy blood cells do.

The result is that chronic fatigue LaTia is constantly faced with, along with other symptoms like intense, frequent pain resulting from a lack of oxygen being delivered to key body parts, causing muscles to seize up. People young and old living with sickle cell disease are also susceptible to strokes and infections and have to take medications that can take even more of a toll on the body.

The symptoms of sickle cell disease make even mundane tasks feel like impossible feats. Last year, LaTia missed weeks of school and more than a few tennis competitions because of her sickle cell crises.

But as a patient at the Aflac Center and Blood Disorders Center of Children’s Healthcare of Atlanta, where many young people are taught to manage their sickle cell disease, LaTia has been taught to manage her symptoms. It also helps that she has a lot of optimism and drive to do what she loves.

"I don’t really let it hold me back from my dreams and what I love to do," says LaTia.

In spite of the challenges her disease causes, she has her heart set on studying biochemistry in college — knowing full well that stress is one of the primary factors that can trigger her disease and send her to the hospital.

Regardless, she's choosing to aim high. “I want to be a hematologist and a marine biologist,” she says. "I expect it to be very stressful, but I’m just ready to take it on."

LaTia also hopes that she can use her passion for learning and knowledge to someday help other people like her.

There's no cure for sickle cell disease — only developments in pain treatment that can make the disease easier to manage. But she wants to help find a cure.

"Sickle cell doesn't only affect the patients. It affects the families too," she says. "No one in the family likes to see a child suffering from such a terrible disease."

"I'm doing it for the patients and for the families."

Though her disease is beyond her control, so far, LaTia has been able to do everything she wants — it's just more of a challenge.

Supported by the Aflac Center and Blood Disorders Center, with compassionate care and patient education and counseling, she has been able to chase her dreams with confidence.

Heading into her future, she's confident in her ability to keep on accomplishing. "I feel invincible," she says.

Ultimately, she hopes that finding a cure is within her reach. "I do a lot of spreading awareness through social media and things," she says. "I want people to be aware of sickle cell and maybe help make a change."

One thing she's certain of is that she'll be one of the people helping make that change, regardless of the obstacles in her way. "Sickle cell has made me feel down a lot, but you can overcome anything," she says. "That's what I've learned — that anything can be overcome."

To learn more about sickle cell disease or the Aflac Cancer and Blood Disorders Center, visit choa.org/fightsicklecell.

Family

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: We all have our stuff, and this is mine.

Family

Internet strangers are helping each other manage chronic illnesses. It's wonderful.

The web can't cure chronic illness, but it can help make it seem less daunting.

True

Being diagnosed with a chronic health problem can be terrifying and isolating — even more so if it means changing your diet, your lifestyle, and the products you bring into your home.

I know because it happened to me.

It was 2000, and I was 21 years old, broke, and sick when a new doctor diagnosed me with celiac disease. After a few visits, he told me I had celiac disease with lactose intolerance. If I wanted to start feeling better, I needed to cut out almost all grains and dairy products.

Just some of the enemies of my fragile digestive system.

Suddenly my entire world was different.

I couldn't eat any of my staple student foods anymore: Farewell, ramen. Adios granola. And I quickly learned that gluten was in almost everything — even products it has no reason to be in, like chewing gum. I was clueless and freaked out.

Thankfully, I had the internet — and so did dozens of other celiac sufferers. We congregated on forums, sharing stories, "safe" food recommendations, and strategies for eating in restaurants. My internet forum friends were my lifeboat, and I held on with both hands to the knowledge they shared.

Taking back control from a chronic illness requires compassion, understanding, and a lot of learning.

For people with chronic health conditions, the web can be an amazing resource to do that.

"Dear Internet: Today I learned licorice is made from wheat flour? Beware and learn from my sadness." — Me in 2002. Image by iStock.

Organizations like Beyond Celiac and The Celiac Foundation have hugely informative websites and vibrant online communities dedicated to helping people get a handle on their disease and access tools and information so they can recover and thrive.

Their online resources include food databases, grocery store apps, restaurant listings, message boards, information about political activism, even a gluten-free dating website. There are active blogger networks too, sharing personal stories, recipes, and motivation.

Resources for people with chronic illness — particularly those triggered by external factors — exist largely because there's nowhere else to turn.

A beautiful gluten-free restaurant meal — perfect for Instagram. Image by iStock.

For people with celiac disease, psoriasis, migraines, and asthma, knowing whether a product is safe to use or consume can be the difference between a normal day and a serious flare-up that might leave them bedridden or worse.

It's really only in the last five years that companies and government regulators started taking the requests of the growing ingredient transparency movement seriously. That spurred a huge increase in the number of products with detailed ingredients lists and more companies realizing that giving consumers access to information can help sales. Particularly for people with asthma, it is much simpler to avoid a common symptom trigger and find truly fragrance-free cleaning and personal care products. For others, change hasn't happened as quickly.

The U.S. Food and Drug Administration agreed to move forward on implementing rules for a gluten-free designation in 2004.

It didn't issue its final guidelines until 2013.

The new regulations allow companies producing gluten-free food products that contain less than 20 parts per million of gluten (a barely negligible amount, and generally not enough to cause a reaction) to label them as "gluten-free." While the FDA assures consumers it will be regularly testing products once they've arrived on store shelves, companies aren't required to submit proof they've tested their products for gluten before they go to market. The regulations also don't apply to food service establishments, personal care products, or medication. Those issues notwithstanding, it is a remarkable step toward complete ingredient disclosure.

Managed properly, people with celiac disease, psoriasis, asthma, and other chronic illnesses can live happy, wonderful lives. But it takes work, diligence, compassion, and support.

Pictured: four people who just learned their mobile phones are celiac-friendly. No, not really. Image by iStock.

Since my celiac diagnosis in 2000, gluten-free food and other products have become a billion-dollar industry. I have good days and bad ones, and sometimes even my best food plans go awry and knock me out of commission for a while. That's the nature of a lifelong illness, and I've come to terms with it. A lot of that acceptance comes from knowing I'm not alone in this.

In the absence of full, government-regulated ingredients lists on every product I eat, wear, or use — there are big-hearted, experience-sharing online communities ready to step in and help me navigate life with a chronic illness.

chronic illness

It’s that time of year again.

I know this time of year is, at times, stressful for everyone.

1. I wish my health didn’t have to be an issue during the holidays.

2. Although I’m doing my best to enjoy our time together, I may be in physical pain or feeling quite sick.

3. This is a particularly hard time of year for me because it brings into focus just how limited my life has become.

4. Though I can't do everything you'll be doing, I don't want you to cancel plans just because I can't participate.

5. It feels incredibly good when you acknowledge that it's hard for me to be chronically ill.

At first blush, LaTia Bell is just like any other high school senior.

Sickle cell disease is a blood disorder that can, to put it bluntly, make life hellish.

"I don’t really let it hold me back from my dreams and what I love to do," says LaTia.

LaTia also hopes that she can use her passion for learning and knowledge to someday help other people like her.

Though her disease is beyond her control, so far, LaTia has been able to do everything she wants — it's just more of a challenge.

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.

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

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

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

2. I need you to show up.

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

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

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

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

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

8. I need you to let me be stubborn.

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

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

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

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

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.

The web can't cure chronic illness, but it can help make it seem less daunting.

Being diagnosed with a chronic health problem can be terrifying and isolating — even more so if it means changing your diet, your lifestyle, and the products you bring into your home.

Suddenly my entire world was different.

Taking back control from a chronic illness requires compassion, understanding, and a lot of learning.

Resources for people with chronic illness — particularly those triggered by external factors — exist largely because there's nowhere else to turn.

The U.S. Food and Drug Administration agreed to move forward on implementing rules for a gluten-free designation in 2004.

Managed properly, people with celiac disease, psoriasis, asthma, and other chronic illnesses can live happy, wonderful lives. But it takes work, diligence, compassion, and support.

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