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What's it like living with mental illness? Ask Wil Wheaton.

Wil Wheaton is the latest in a line of people to tell his story of what it's like living with mental illness for Project UROK.

Actor, writer, and producer Wil Wheaton recently recorded a video discussing what it's like living with mental illness.

You might know him from his work on "Star Trek: The Next Generation" or "The Big Bang Theory," or perhaps you're one of his nearly 3 million Twitter followers — or maybe you don't know him at all.

No matter the case, you probably know someone like him.


Wheaton's video was for Project UROK, a nonprofit aimed at breaking down the stigma of mental illness.

His is just the latest in a series of videos by the organization (which is pronounced "project you are okay").

Writer and actress Mara Wilson ("Matilda") also opened up about her experiences with anxiety, obsessive-compulsive disorder, and depression; blogger and media personality Perez Hilton recorded one about his struggle with anxiety and depression; and I even recorded one about my own bouts of depression and social anxiety.

Wheaton's experience is his alone, but there's some overlap with others who struggle with mental illness.

In the video, Wheaton mentions the fact that for years, he wasn't even aware that depression and anxiety were weighing him down — he just assumed that was simply how life was.

GIFs via Project UROK.

Later, he touches on the experience of finally seeking treatment and how that helped him regain stability in his life.

Trying to explain mental illness to someone who hasn't dealt with it is really, really hard.

There are so many misconceptions that go along with it. Depression is more than just feeling sad. Obsessive-compulsive disorder is more than just liking your apartment a certain way. Bipolar disorder is more than just having an up-and-down day.

Hearing the stories of others, with their similarities and differences, can help paint a picture of what it's actually like to live with mental illness. Most importantly, it can help those who do live with it to realize that they are not alone.

The purpose of Project UROK is to create a safe space for people with mental illness to share their stories and hear the stories of others.

"Project UROK is the resource I wish I'd had as a teenager when I was feeling isolated due to my severe anxiety, OCD, and depression," Project UROK founder Jenny Jaffe told me in an email. "We're creating a platform where all kinds of people can tell all kinds of stories related to mental illness in a way that's friendly, fun, inclusive, and non-judgmental. My ultimate goal is a world where we think of mental healthcare not as a luxury, but as a basic human right. We can only do so if we stop being afraid to talk about what mental illness really is and what it actually looks like."


The choice to use the term "mental illness" instead of just "mental health" is deliberate, intended to reduce stigma.

"I think we invoke the term 'mental illness' a lot as a way to dismiss people that society doesn't find particularly valuable," she told me. "Or we use it as an excuse for an inexcusable action. In both cases, the clear message is that mentally ill people as a whole are 'other,' and therefore not worth our time or care."

And she's absolutely right. We see the term used to describe people involved in mass shootings, for example. The reality is that people with mental illness are only responsible for around 3-5% of violent crimes. They're actually significantly more likely to be victims of violent crimes than to take part in them.

"Until we can talk about mental illness as an illness that, like anything else, requires professional treatment and care, we will continue to think of mental illness as something to be kept a secret."

"The reality is that 1 in 4 Americans struggle with a diagnosable mental illness. 'Fear of a name only increases fear of the thing itself.' Until we can talk about mental illness as an illness that, like anything else, requires professional treatment and care, we will continue to think of mental illness as something to be kept a secret, and of mental healthcare as a non-priority," Jaffe said.

If you're like Wil Wheaton, Mara Wilson, Perez Hilton, or the tens of millions of others who live with mental illness, please remember that you're not alone. You are okay.


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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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