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.
