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One woman's journey coping with unseen pain may change how the world sees disabilities.

One woman's journey coping with unseen pain may change how the world sees disabilities.
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Dignity Health

When Annie Segarra goes about her daily life, it's not immediately obvious she's in pain 24/7.

Since she's so used to living with discomfort, she's able to walk around for a few minutes, but any longer than that, and she has to sit down and rest. However, the fact that she's not always in a wheelchair makes many passersby question wether or not she really has a disability and often results in judging looks and harsh words.

"They can't see that you're in pain because you look 'just fine,'" Segarra explains.

All photos via Annie Segarra, used with permission.

Segarra has Ehlers-Danlos syndrome (EDS), which is a rare connective tissue disorder that affects collagen in the body and causes joints to stretch farther than normal. While that may sound like some sort of superpower, it's anything but, and it's also just the tip of the iceberg in terms of the symptoms that people who have it experience.

Since collagen runs through the entire body, EDS acts as an umbrella for a seemingly endless list of disorders, including poor vision, chronic fatigue, and joint pain. It's also likely connected to postural orthostatic tachycardia syndrome (POTS), which causes a person's blood pressure to drop and heart rate to spike upon standing.

Segarra lives with all these symptoms and many others, but more often than not, they are invisible to the outside eye.

The discomfort and anxiety that accompanies this is enough of a strain, but when you tack on doctors and everyone else not believing you're in pain, everything's amplified.

"It feels like being at the bottom of a well shouting up and there's nobody there," Segarra says.

Annie with her cane dealing with a pain spike at the grocery store.

What's worse, a large part of why she went undiagnosed for so long was because doctors continued to downplay and dismiss her symptoms and self-diagnoses.

Segarra actually started having symptoms as early as infancy, but she didn't realize they might be connected until she reached her early 20s.

She was working two jobs and taking care of her sister who has autism when she started experiencing severe pain in her feet while standing. One of her jobs at the time was as hostess at a restaurant, so she was confronted with that pain quite often, but she thought it might just be an intolerance to wearing heels.

When it got to the point where she could barely stand at all, she went to a see a podiatrist. He took an X-ray of her feet while she was standing, and it looked like she had flat feet. He assumed that was the root of her pain, so he prescribed orthotics. (Later Segarra would learn that people with EDS often appear to have flat feet because of how their hyperactive joints react to weight.)

After orthotics did nothing to help, the doctor suggested creating arches in her feet surgically. Not knowing what else to do, Segarra agreed.

The surgery left her in an unimaginable amount of distress and unable to walk for close to a year. But it also ultimately led to her diagnosis.

Annie in the hospital.

Segarra learned she was strangely immune to anesthesia — another EDS-related symptom. After six months in a wheelchair caused extreme back pain, she got an MRI that showed something unusual: She appeared to have dislocated joints all over her body.

By that time, she'd been documenting her journey with chronic pain via a video blog for about two years and was regularly communicating with other chronically ill and disabled people online. When she described her symptoms, EDS had kept coming up. However, every doctor she mentioned it to dismissed it until the moment she broke down in front of her spine specialist.

At that point, she had been managing escalating symptoms on her own for over a decade, and every time she tried to get answers from a doctor, they either had no advice or mocked her for self-diagnosing such a rare disorder. She was scared and exhausted and had finally had enough.

Thankfully, a doctor (who happened to be a woman) came in at that moment and really listened to what Segarra had to say. The doctor admitted to not knowing about EDS, but after looking it up on her phone, she turned to the primary specialist and said, "She could have this."

That was the tipping point. From there, Segarra was referred to a geneticist who recommended a chromosome blood test to find the genetic variant for EDS. Six months later, she had an official diagnosis.

After all that, Segarra still calls herself lucky because her diagnosis only took three years to get. Many people with similar "invisible" disorders aren't so fortunate.

The experience set her on a mission to change the misconceptions surrounding disabilities and educate others about the many ways one can be impaired.

Ever since middle school, Segarra's been an activist for one cause or another. As a queer Latinx woman, she always had a lot to fight for, but after experiencing years of blatant disregard for her disability, this fight reinvigorated the rest.

"Becoming disabled made me look at my activism real hard," Segarra says.

She uses her skills as a performer and storyteller to give a face and voice to her illness. On her YouTube channel, she confronts the prejudice people with less visible disabilities face on a daily basis.

Segarra has firsthand experience being called a faker simply because people don't realize that some disabilities don't require people to use an assisting device like a wheelchair all the time.

A note someone left on the car of a person with an invisible disability.

She also explores how having a disability affects things like body positivity and being in the LGBTQ community.

Unsurprisingly, Segarra's passion and strength is affecting a growing number of followers, but she knows there's still much more work to be done.

Right now, there's hardly any representation of people like her in media, which makes it easy for the world to remain ignorant about them. For example, Segarra had a heck of a time finding a character to be for Halloween because people with disabilities barely exist in pop culture.

But her activism is slowly but surely changing peoples' perceptions. She says she gets lots of comments like, "Thank you for saying this because I was one of those assholes who thought like this."

She's also helping people who are still searching for a diagnosis realize they're not alone on their journey.

Segarra hopes that one day, no one will be discounted for having a less visible disability. However, for that to happen, we have to learn to quell their snap judgements, and that starts with admitting we don't know what all disabilities look like.

Learn more about how to spot disabilities (spoiler alert, you can't) here:

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After seeing a man struggle to pay for pet food, this couple created a pet food pantry for the community

Photo courtesy of Kenneth and Jill Gonsalves
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It can be expensive to have a pet. It's possible to spend between $250 to $700 a year on food for a dog and around $120-$500 on food for a cat. But of course, most of us don't think twice about the expense: having a pet is worth it because of the company animals provide.

But for some, this expense is hard to keep up, no matter how much you adore your fur baby. And that's why Kenneth and Jill Gonsalves decided to help.

Kenneth had seen a man scraping together change in a store to buy pet food, so he offered to buy the man some extra pet food. Still, later that night he couldn't stop thinking about the experience — he worried the man wasn't just struggling to pay for pet food, but food for himself, too.

So he went home and told his wife — and immediately, they both knew they needed to do something. So, in December 2020, they converted a farm stand into a take-what-you-need, leave-what-you-can Pet Food pantry.

"A lot of people would have watched that man count out change to buy pet food. Some may have helped him out like my husband did," Jill says. "A few may have thought about it afterward. But, only someone like Kenny would turn that experience into what we have today."

"If it weren't for his generous spirit and his penchant for a plan, the pantry would never have been born," she adds.

A man with sunglasses hands a box of cat food to a woman smiling Photo courtesy of Kenneth and Jill Gonsalves

At first, the couple started the pet food pantry with a couple hundred dollars of pet food they bought themselves. And to make sure people knew about the pantry, they set up a Facebook page for the pantry, then went to other Facebook groups, such as a "Buy Nothing group," and shared what they were doing.

"When we started, we weren't even sure people would use us," Jill says. "At best, we were hoping to be able to provide enough to help people get through the holidays."

But, thanks to their page and word of mouth, news spread about what they were doing, and the donations of more pet food started flooding in, too. Before long, they were coming home to stacks of food — and within a couple of months, the pantry was full.

Yellow post-it note with handwritten note that reads: "Hi, I read your story on Facebook. Here is a small donation to help. I have a 3-year-old yellow lab who I adore. I hope this helps someone in need. Merry Christmas. Meredith" Photo courtesy of Kenneth and Jill Gonsalves

"The pounds of food we have gone through is well, well, well into the thousands," Jill says. "The orders from our Amazon Wish List alone include several hundred pounds of dry food, a couple of hundred cases of canned food, and thousands of treats and toys. But, that does not even take into account the hundreds of drop-offs, online orders, and monetary donations we have received."

They also got many 'Thank you notes' from the people they helped.

"I would like to thank you for helping us feed our fur babies," one note read. "My husband and I recently lost our jobs, and my husband [will] hopefully [find] a new one. We are just waiting for a call."

Another read: "I just need to say thank you from the bottom of my heart. I haven't worked in over a month with a two-year-old at home. Dad brings in about $300/week. From the pandemic to Christmas, it has been tough. But with the help of beautiful people like you, my fur baby can now eat a little bit longer, and my heart is happy."

Jill says that she thinks the fact that the pet pantry is a farm stand helps people feel better.

A woman holding a small black dog and looking at the camera is greeted by Jill Gonsalves Photo courtesy of Kenneth and Jill Gonsalves

"When we first started this, someone who visited us mentioned how it made them feel good to be able to browse without feeling like they were being watched," she says. "So, it's been important to us to maintain that integrity."

Jill and Kenneth aren't sure how many people they've helped so far, but they know that their pet food pantry is doing what they hoped it would. "The pet owners who visit us, much like donations, come in ebbs and flows," Jill says. "We have some regulars who have been with us since the beginning. We also have some people that come a few times, and we never see again."

"Our hope is that they used us while they were in a tough spot, but they don't need us anymore. In a funny way, the greatest thing would be if no one needed us anymore."


Today, the Acushnet Pet Pantry is still going strong, but its stock is running low. If you want to help out, visit their Facebook page for updates and to find ways to donate.
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Four big takeaways from National Geographic's new 'Fauci' documentary

National Geographic/YouTube

National Institute of Allergy and Infectious Diseases director Dr. Anthony Fauci

When I first saw the preview of National Geographic's documentary about Anthony Fauci, I was confused. My assumption was that the documentary was made to profile his role in the COVID-19 pandemic response as that's how he became a household name. How did the filmmakers know they would need to get footage of Fauci at the very beginning of the pandemic, when no one knew yet what it would become?

The answer is: They didn't. This film was never intended to be about this pandemic at all. The profile of Anthony Fauci was planned by award-winning filmmakers John Hoffman and Janet Tobias in 2018 and they began filming in the fall of 2019, several months before anyone had even heard of SARS-CoV-2. The filmmakers originally planned to highlight Fauci as a lesser-known public servant, focusing primarily on his work throughout the AIDS pandemic.

What they ended up with is parallel stories of Fauci's AIDS work and Fauci's COVID response, and their "lesser-known" subject becoming a superstar during the making of the film. In fact, the press release for the film included the following, which is an unusual disclaimer but one the filmmakers felt necessary in the current climate: "Dr. Fauci had no creative control over the film. He was not paid for his participation, nor does he have any financial interest in the film's release."

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Tory Burch
Tory Burch Empowered Women
Empowered Women

Military spouses often choose their spouse's career over their own. This organization is changing that.

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When Sue Hoppin was in college, she met the man she was going to marry. "I was attending the University of Denver, and he was at the Air Force Academy," she says. "My dad had also attended the University of Denver and warned me not to date those flyboys from the Springs."

"He didn't say anything about marrying one of them," she says. And so began her life as a military spouse.

The life brings some real advantages, like opportunities to live abroad — her family got to live all around the US, Japan, and Germany — but it also comes with some downsides, like having to put your spouse's career over your own goals.

"Though we choose to marry someone in the military, we had career goals before we got married, and those didn't just disappear."

Career aspirations become more difficult to achieve, and progress comes with lots of starts and stops. After experiencing these unique challenges firsthand, Sue founded an organization to help other military spouses in similar situations.

Sue had gotten a degree in international relations because she wanted to pursue a career in diplomacy, but for fourteen years she wasn't able to make any headway — not until they moved back to the DC area. "Eighteen months later, many rejections later, it became apparent that this was going to be more challenging than I could ever imagine," she says.

Eighteen months is halfway through a typical assignment, and by then, most spouses are looking for their next assignment. "If I couldn't find a job in my own 'hometown' with multiple degrees and a great network, this didn't bode well for other military spouses," she says.

She's not wrong. Military spouses spend most of their lives moving with their partners, which means they're often far from family and other support networks. When they do find a job, they often make less than their civilian counterparts — and they're more likely to experience underemployment or unemployment. In fact, on some deployments, spouses are not even allowed to work.

Before the pandemic, military spouse unemployment was 22%. Since the pandemic, it's expected to rise to 35%.

Sue eventually found a job working at a military-focused nonprofit, and it helped her get the experience she needed to create her own dedicated military spouse program. She wrote a book and started saving up enough money to start the National Military Spouse Network (NMSN), which she founded in 2010 as the first organization of its kind.

"I founded the NMSN to help professional military spouses develop flexible careers they could perform from any location."

"Over the years, the program has expanded to include a free digital magazine, professional development events, drafting annual White Papers and organizing national and local advocacy to address the issues of most concern to the professional military spouse community," she says.

Not only was NMSN's mission important to Sue on a personal level she also saw it as part of something bigger than herself.

"Gone are the days when families can thrive on one salary. Like everyone else, most military families rely on two salaries to make ends meet. If a military spouse wants or needs to work, they should be able to," she says.

"When less than one percent of our population serves in the military," she continues, "we need to be able to not only recruit the best and the brightest but also retain them."

"We lose out as a nation when service members leave the force because their spouse is unable to find employment. We see it as a national security issue."

"The NMSN team has worked tirelessly to jumpstart the discussion and keep the challenges affecting military spouses top of mind. We have elevated the conversation to Congress and the White House," she continues. "I'm so proud of the fact that corporations, the government, and the general public are increasingly interested in the issues affecting military spouses and recognizing the employment roadblocks they unfairly have faced."

"We have collectively made other people care, and in doing so, we elevated the issues of military spouse unemployment to a national and global level," she adds. "In the process, we've also empowered military spouses to advocate for themselves and our community so that military spouse employment issues can continue to remain at the forefront."

Not only has NMSN become a sought-after leader in the military spouse employment space, but Sue has also seen the career she dreamed of materializing for herself. She was recently invited to participate in the public re-launch of Joining Forces, a White House initiative supporting military and veteran families, with First Lady Dr. Jill Biden.

She has also had two of her recommendations for practical solutions introduced into legislation just this year. She was the first in the Air Force community to show leadership the power of social media to reach both their airmen and their military families.

That is why Sue is one of Tory Burch's "Empowered Women" this year. The $5,000 donation will be going to The Madeira School, a school that Sue herself attended when she was in high school because, she says, "the lessons I learned there as a student pretty much set the tone for my personal and professional life. It's so meaningful to know that the donation will go towards making a Madeira education more accessible to those who may not otherwise be able to afford it and providing them with a life-changing opportunity."

Most military children will move one to three times during high school so having a continuous four-year experience at one high school can be an important gift. After traveling for much of her formative years, Sue attended Madeira and found herself "in an environment that fostered confidence and empowerment. As young women, we were expected to have a voice and advocate not just for ourselves, but for those around us."

To learn more about Tory Burch and Upworthy's Empowered Women program visit https://www.toryburch.com/empoweredwomen/. Nominate an inspiring woman in your community today!

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