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Well Being

Reminder: Not being able to see someone's disability doesn't mean they don't have one

Reminder: Not being able to see someone's disability doesn't mean they don't have one

When I was pregnant with my third child, I developed a condition called SPD (symphisis pubis dysfunction) that made standing or walking for too long excruciatingly painful. I was only four months pregnant and looked perfectly healthy, but I had to use the motorized carts at the grocery store to do my shopping. When I'd stop the cart and walk to a shelf to pick out an item, I often wondered if people questioned why I was using the cart. I wasn't elderly, and I wasn't injured. I barely looked pregnant and could clearly could stand and walk. Did they wonder if I was just lazy and selfishly taking the cart from someone who really needed it?

That was my first taste of what daily life can be like for the millions of people living with invisible disabilities.


I have friends and family members with rheumatoid arthritis, Ehlers-Danlos Syndrome, POTS (Postural Orthostatic Tachycardia Syndrome), and other conditions that sometimes affect their ability to move or be active. You can't tell that they struggle with pain or motility or exhaustion just by looking at them. They appear healthy, and they can move freely on some, or even most, days. But when they can't, they can't. They sometimes need assistance from canes or wheelchairs or other accommodations when their bodies flare up on them.

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A Facebook post from children's book author Kristen Waldbieser has gone viral for pointing out how such invisible disabilities can be overlooked or downplayed by others. Waldbieser has POTS, and she shared two photos of herself at a Disney theme park—one in a wheelchair with the caption, "This is me," and one where she's standing and posing with the caption, "This is also me."

She wrote:

"Yesterday I was at Disney, and I was using my wheelchair, which I need to go long distances (like a theme park). Anyway, I stood up to take a photo, and someone said (jokingly), 'Oh, the wheelchair is a hoax!' They quickly followed that they were kidding. However, the words stung with me. No, I don't need my wheelchair every day. But my wheelchair helps me get places that I otherwise probably couldn't go. But just because I don't need it every day, doesn't mean it's not real and it's not needed. It is not a hoax. And even jokingly, it's not ok to say that to someone. Not all disabilities or chronic illness looks the same. And it's time to break that stigma that those with chronic illnesses are faking it, which unfortunately, is heard by so many far too often. Long story short, you never know someone else's story, so please be kind with your words. 💖"

The person may not have intended any harm in their "kidding" remark, but it's not funny to jokingly accuse someone of faking their needs—especially because so many people really do assume that their conditions aren't really that bad.

Such assumptions are particularly prevalent for young people with invisible disabilities. Isa Fitzgibbons, 15, was 12 years old when she was diagnosed with juvenile rheumatoid arthritis. One day, she was using a wheelchair at the zoo when she felt the judgment from a group of college students. "They seemed respectful enough," she said, "until I got up to walk to the restroom. Then they started pointing and whispering, and I felt like an exhibit for them."

That incident stopped her from using a wheelchair in public for a long time. "It's a struggle to explain why you're limping, or how you're not lazy, you're just in pain—or why you're in pain," she says.

Ramona Gregory, 20, has both Ehlers-Danlos Syndrome and POTS. She's always been active—in fact, she runs her own cheerleading business. But her active life is spotted with days where just basic functioning is difficult, a reality that was particularly challenging in high school.

"I had a plan in choir class where I would sit down when I needed to since I couldn't stand for the entire class period without fainting," she told Upworthy. "The teacher was really cool about it. Kids around me though kept assuming I was slacking off and would act annoyed at me. Some kids would even follow my lead and sit down after me, although the teacher would promptly tell them to stand."

Gregory also says it's difficult for her to use a walker in public, even when she needs to. "I'm constantly afraid someone is going to say I'm faking it because I don't use it every day."

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Gregory's mom, Heléna, also has EDS and POTS (both can be inherited, though aren't always). She sometimes feels anxious about using a disability parking plaque, fearing people might get mad because she doesn't appear disabled. But that's not the only struggle.

"One of the really difficult things is being afraid of posting or sharing really awesome things you do because it looks like you're just living it up and not really disabled," she told Upworthy. "People don't see the preparation and the aftermath of participating in both normal functions and the fun stuff."

She enjoys mountain biking, for example, but only rides with her husband or by herself. "I can't just jump on my bike and go," she says. "My heart rate, blood pressure, and adrenaline are unpredictable, and I"m on and off the bike continually. I tried to ride with others but found I had to explain everything, like I was listing off excuses. Others would get annoyed. One time I ditched my bike and passed out on the side of the trail. The response was that I needed to get myself together because I was embarrassing the other riders in our group. People just don't get it, even when it comes down to actually losing consciousness."

"We spend a lot of time faking normalcy just so we don't draw attention or judgment. We hide what we do to avoid judgment," she says. "That's really it. People judge and that sucks."

It does suck. But hopefully stories like these will help more of us recognize that people are struggling with disabilities or chronic illnesses that we can't see and have no room or reason to judge anyone else's accommodations.

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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.

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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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