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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
Seventh Generation

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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Three women, three MS journeys: How multiple sclerosis looks different for everyone

Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

True

It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.

Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.

All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.

To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.

“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”

As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.

“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.

Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.

“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”

To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.

Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.

Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.

Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.

“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”

However, learning more about the disease—and the realities of disease progression—scared her.

“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.

She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”

By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.

Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.

“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.

Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.

“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.

“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”

In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.

“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.

However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.

Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.

Part of how she manages her MS is by looking at the positives.

“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”

Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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People share totally normal things from the 90s/00s that are now considered 'luxuries'

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When people decide to get married, the primary focus in the relationship often becomes the wedding. There are so many details to think about—the venue, the guest list, the food, the wedding party, the dress and tux…it's practically a full-time job, especially if you're going big.

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In the video, a couple is visiting with a counselor for premarital counseling. All three characters are played by Knowles himself, which is quite entertaining, but his counseling advice is spot on.

After asking the couple if they're excited about their wedding, the counselor says, "Yeah, it's meaningless. Your wedding—it has nothing to do with the success of your relationship. I'm not going to say it's a waste of $20,000, unless of course you get divorced a few years later, which 50% of people do. So your marriage is practically a coin flip."

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"Wrong," Jimmy responds. "Everyone's in love on their wedding day. Do you know why 50% of those marriages fail? Because they didn't know what love required of them—service, selflessness, sacrifice. Not one-sided. Mutual."

"They didn't have a plan to get things right," he adds. "And they didn't have a plan for what to do when things got hard and stressful, which they always do eventually."

Counselor Jimmy (who is not a real counselor, for the record) pulls no punches, but he delivers the reality of marriage in a way that both highlights what it requires and also what's really beautiful about it.

In less than 10 minutes, he manages to entertain while also dropping a crapton of solid truth and advice that would help anyone who is planning on getting married—or even people who are already married—strengthen their relationship.

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People in the comments expressed their appreciation for the free marital counseling.

"As a child of divorce and someone who just celebrated our 20th anniversary, I wholeheartedly agree with every single word," shared one commenter. "Fantastic wisdom here. I can’t say we’ve never hurt each other in conflict, but we have the commitment and care to put in the work and grow through what we’re going through."

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"This is how my marriage survived and thrived for 25 years, 1 week, and 6 days," shared another. "The day my husband passed away at age 49. A marriage really does take work, but it’s so worth it and knowing it’s a shared experience of love…"

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Don't let the boycotts bother you. A staggering number of Americans now support LGBTQ rights.

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via Daniel James/Unsplash

More Americans are supportive of the LGBTQ community than ever.

There have been numerous high-profile controversies surrounding LGBTQ rights recently that make it appear as though there has been a considerable backlash in acceptance of the LGBTQ community among Americans.

There’s the Bud Light backlash after the popular beer brand used trans activist Dylan Mulvaney as a spokesperson. There was an uproar after the Los Angeles Dodgers agreed to honor the Sisters of Perpetual Indulgence on LGBTQ Pride Night. There has also been an ongoing controversy surrounding Target selling LGBTQ-friendly merchandise.

Clearly, if people are getting riled up over the normalization of LGBTQ culture throughout America, we must be amid a considerable backlash, right? In reality, the truth is the exact opposite.

A new poll by GLAAD has found that non-LGBTQ Americans are more accepting of the LGBTQ community than ever and want them to be treated like everyone else. So, even though there is a loud contingent of political activists pushing back against LGBTQ progress, they don’t seem to significantly impact the growing movement toward acceptance.

Simply put, the opposition to LGBTQ people may be loud, but it’s only getting smaller.

The survey of over 25,000 non-LGBTQ Americans found three encouraging facts:

  • A 96% supermajority of non-LGBTQ Americans agree that school should be a safe and accepting place for all youth.
  • A 91% supermajority of non-LGBTQ Americans agree that LGBTQ people should have the freedom to live their lives and not be discriminated against.
  • An 84% supermajority of non-LGBTQ Americans support equal rights for the LGBTQ community.

The study also found that despite outrage over Dylan Mulvaney appearing in a Bud Light promotion, the vast majority of Americans are okay with seeing LGBTQ people and families represented in the media.

This corresponds with the fact that on the 2021 to 2022 TV season nearly 12% of all regular characters on prime-time television were LGBTQ. That’s a sea change over the 2005 to 2006 report that found only 2% of all characters were LGBTQ.

  • 75% of non-LGBTQ adults feel comfortable seeing LGBTQ people in advertisements.
  • 73% of non-LGBTQ adults report feeling comfortable seeing LGBTQ characters included in TV shows or movies.
  • 68% of non-LGBTQ adults feel comfortable seeing an LGBTQ family with children included in an advertisement.

The strange state of affairs in America is that even though an increasing number of Americans want LGBTQ people to have equal rights, there has been a staggering number of new laws aimed at disenfranchising them that have been proposed over the past three years.

GLAAD estimates that over 500-plus anti-LGBTQ laws have been proposed in 2023 alone.

“Support for LGBTQ equality has reached an all-time high, but allyship must turn into action,” GLAAD President and CEO Sarah Kate Ellis said in a statement. “Media, content creators, and corporate leaders need to lead and respond to hate with undeterred support for the LGBTQ community, including LGBTQ employees, shareholders and consumers. Allyship is not easy, but when values of diversity, equity, and inclusion are tested, we must defend them unequivocally."


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