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.

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.

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Courtesy of Macy's

In many ways, 18-year-old Idaho native, Hank Cazier, is like any other teenager you've met. He loves chocolate, pop music, and playing games with his family. He has lofty dreams of modeling for a major clothing company one day. But one thing that sets him apart may also jeopardize his future is his recent battle against a brain tumor.

Cazier was diagnosed in 2015. When he had surgery to remove the tumor, he received trauma to his brain and lost some of his motor functionality. He's been in physical, occupational, and speech therapy ever since. The experience impacted Cazier's confidence and self-esteem, so he's been looking for a way to build himself back up again.

"I wanted to do something that helped me look forward to the future," he says.

Enter Make-A-Wish, a nonprofit organization that grants wishes for children battling critical illnesses, providing them a chance to make the impossible possible. The organization partnered with Macy's to raise awareness and help make those wishes a reality. The hope is that the "wish effect" will improve their quality of life and empower them with the strength they need to overcome these illnesses and look towards the future. That was a particularly big deal for Cazier, who had been feeling like so many of his wishes weren't going to be possible because of his critical illness.

"In the beginning, it was hard to accept that it would be improbable for me to accomplish my previous goals because my illness took away so many of my physical abilities," says Cazier. His wish of becoming a model also seemed out of reach.

But Macy's and Make-A-Wish didn't see it like that. Once they learned about Cazier's wish, they knew he had to make it come true by inviting him to be part of the magical Macy's holiday shoot in New York.

Courtesy of Macy's

Make-A-Wish can't fulfill children's wishes without the generosity of donors and partners like Macy's. In fact, since 2003, Macy's has given more than $122 million to Make-A-Wish and impacted the lives of more than 2.9 million people.

Cazier's wish experience was beyond what he could've imagined, and it filled him with so much joy and confidence. "It is like waking up and discovering that you have super powers. It feels amazing!" he exclaims.

One of the best parts about the day for him was the kindness everyone who helped make it happen showed him.

"The employees of Macy's and Make-A-Wish made me feel welcome, warm, and cared for," he says. "I am truly grateful that even though they were busy doing their jobs, they were able to show kindness and compassion towards me in all of the little details."

He also got to spend part of the shoot outdoors, which, as someone who loves climbing, hiking, and scuba-diving but has trouble doing those activities now, was very welcome.

Courtesy of Macy's

Overall, Cazier feels he grew a lot during his modeling wish and is now emboldened to work towards a better quality of life. "I want to acquire skills that help me continue to improve in these circumstances," he says.

You can change the lives of more kids like Cazier just by writing a letter to Santa and dropping it in the big red letterbox at Macy's (you can also write and submit one online). For every letter received before Dec. 24, 2019, Macy's will donate $1 to Make-A-Wish, up to $1 million. By writing a letter to Santa, you can help a child replace fear with confidence, sadness with joy, and anxiety with hope.

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