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WTF is Hypermobility? The Invisible Chronic Illness Explained

The purpose of this post is equal parts education and catharsis. I’m going to talk about what HSD is—and also my journey with it. 

HSD is challenging to diagnose, and I benefited greatly from finding information strangers posted on the internet about their experiences with HSD and EDS. If this is something you deal with, I hope this is helpful for you and you know you’re not the only one! If this isn’t something that you deal with, thank you so much for listening to my story! 

Be excellent to each other.

Fun Fact: The collagen in my body (likely!) acts differently than the collagen in your body. 

Fun Fact #2: The reason that is, is because I have something called Hypermobility Spectrum Disorder (HSD), a genetic connective tissue disorder. 

Fun Fact #3: HSD is notoriously hard to diagnose—this is something I only figured out this past June, and something I am still learning so much about. 

On the surface, it just looks like I’m ridiculously flexible. 

What it does mean though is that the ligaments, tendons, and other structures that support my joints stretch more than normal. Basically, I am SO flexible that my joints are poorly supported—and my muscles jump in to help when they’re not supposed to. 

This can cause frequent injury, sprain, or joint pain. 

Fun Fact #4: Collagen is found all throughout the body! That means for some people with HSD, they can have issues outside of joint and muscle pain, including digestive issues, fatigue, faintness, and issues with—my new favorite word—proprioception. Proprioception is how your body knows where it is in space—meaning people with HSD can seem “clumsy” or stumble around a bit.  

HSD is a spectrum disorder—on the high end of that spectrum is Ehlers-Danlos Syndrome (EDS). Are you familiar with “Jessica Out of the Closet”? She’s a popular influencer/YouTuber that talks about her experience with EDS. Check her out; she’s great!  

On the lower end of the spectrum, you might be “asymptomatic” but still have some hypermobile tendencies.  

Hypermoblity Spectrum: It's different for everyone.

Hypermoblity Spectrum: It’s different for everyone.

I’m on the lower end, somewhere in the middle. Everyone who may have HSD or EDS will have it manifest a little differently. Therefore, my experience will be somewhat different from yours. That being said, I’m learning that HSD symptoms can be as severe as EDS, they just manifest differently. 

But hopefully, without sounding too much like a martyr, you’ll indulge me as I tell you how this affected me. 

This time last year, I had trouble walking. 

In retrospect, this issue has affected me since about 2014, with injuries that refused to heal properly, but started traumatically manifesting in 2019. 

In early 2019, I had what I thought was a small procedure to fix a stubbornly unhealing hip issue—and instead of recovering, my entire body seized up, putting me through the worst pain I’d ever experienced. My back spasmed, my hip joints refused to align, and despite my best efforts to get the best care I needed, it felt like I was playing whack-a-mole with a hodge-podge of maladies. Over the course of several months, I dealt with various hip, back, ab, feet, hamstring (you name it!) issues. I couldn’t wear regular shoes—I could only find one special pair of sneakers that wouldn’t put my feet in pain. It was exhausting to get through the day-to-day, and I tried to make sure that it didn’t show too much. 

Going 3 blocks to the grocery store was harrowing. On recommendation from a doctor, I started using hiking poles to help me get around. Thankfully, I could still go around my office without using them, but any time outside of the office, I needed to have my poles with me. 

I was (wrongfully) so embarrassed to be using these walking aids. What would people think? Would people understand if I needed to sit down on the bus? Would they think that I was trying to take the seat away from others, faking it? The good news is that I had absolutely no reason to be ashamed of using these walking aids. They were so helpful, and so many people of all ages use walking aids to get around. And when I asked to sit down on the bus, people let me, no questions asked. 

However, I had no idea what was happening to my body—and neither did any of my very well trained doctors. I went to so many—doctors, physical therapists, chiropractors, and appointments on top of appointments—to try to help me figure this out. They were as stumped as me; one PT called me their “most challenging case.” 

What’s great is that I had great friends supporting me. For example, before the hiking poles recommendation, I had my company holiday party coming up—I really wanted to go, but what if I fell? Or needed to sit the entire time? A friend went with me, to make sure I felt comfortable, that we could sit when I wanted to, and that I could lean against him if I needed. When I got injections to help “sure up” some of my weak joints, my friend came over and spent the day with me, in case I needed anything. 

But without understanding what was happening to me, and without the right medical providers to help me, I was tired, in pain, and scared. 

I now understand that HSD is not well-known and does require special training. 

After lots of tears, time, and googling, I figured out that what I had was HSD. Better yet, I found a physical therapist in my neighborhood who not only specialized in hypermobility issues but had a very similar type of HSD as I did (thank you, Yelp!). 

Working with her felt like a Godsend. For the first time, it felt like someone was speaking my language. I told her my symptoms, and she immediately understood what I was talking about—and knew how to fix it. She was able to properly diagnose me, and I quickly started to see improvement. 

From stumbling around in pain, struggling to walk several blocks, I am now able to bike, hike, surf, and swim. I credit my physical therapist and consistent physical therapy for my turnaround. To note, this is something I will need to manage my entire life. But I now have the tools to do so. I will also credit resolve and tenacity—it unfortunately takes an ample amount of perseverance to navigate our American health care system. Throughout the years, I *knew* the issues I was dealing with were connected. Don’t doubt the little voice in your head. If you think something is off, keep pushing until you find your answer. 

Lastly, a good sense of humor is indispensable. 

HSD isn’t the end of your world! Far from it; with proper education and management, you can lead a regular life. You just need to really be on top of your physical therapy, and it pays to educate yourself on how it affects your body. 

If you or a loved one has HSD, this is what I have found helpful: 

  • Find a medical provider specializing in hypermobility. 

This was instrumental to my own education and physical turnaround. We made small, but significant changes that helped end and manage the pain. 

  • Stock your bookshelf. These two books are my bibles: 

For Mobility: The Roll Model – Hypermoble people are flexible–but that means that traditional stretching can actually be harmful. The Roll Model is a book and collection of therapy balls that help you release tension in your muscles. 100% game-changing. 

For Strength: Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS. Working with previous PTs, I would injure myself from seemingly harmless PT exercises. This book provides a system to help you work up to more advanced exercises within the principles of hypermobility and EDS. 

Also a benefit of this book, if you CAN’T find a PT that specializes in hypermobility, this book provides guidelines for the PT, to help educate and guide you both through. 

Life-long physical therapy is now your new norm. This is what’s in my “Physical Therapy Toolbox:”

  • The Roll Model Therapy balls – I recommend just getting the whole starter kit. I most often use the “PLUS” balls the most, but prefer the “Alpha” for my thighs and upper back.  
  • Short foam roller – I use this every morning. 
  • Long foam roller – Useful for certain exercises.  
  • Massage gun – There are 101 massage guns now. Doesn’t have to be fancy, but a good mid-range one should do the trick. While this has been incredibly helpful for me, don’t use this over other tools. This can only do so much. Make sure you still use your therapy balls and foam rollers. 
  • Resistance bands – Work up to using these. 
  • Yoga strap 
  • Yoga block 

Resources:

Thank you for listening to my story. I hope something here helped you today. 

It’s 2020, so I don’t have to lecture you about being nice to people. If anything, this experience has underscored the wisdom of my favorite sages Bill & Ted, “Be excellent to each other. (And party on, dudes!)”

Top 10 Food Recommendations for Ho Chi Minh City

It’s high time I wrote a post about this.snails eat

Every year, a few friends say they’re traveling to Vietnam, and since I used to live there, ask me for my top tips for traveling in Ho Chi Minh City. I’m more than happy to share recommendations; Vietnam will forever hold a special place in my heart. But as I’m sure both my Vietnamese and international friends who have lived in Vietnam will tell me—this list is far from complete.

Below started as a list given to a guy I was talking with on OKCupid (I really only gave him this list and then forgot to talk to him afterwards, whoops), and then evolved as other friends asked for recommendations in Ho Chi Minh City. While mostly favorite foods and quick tips and potentially outdated, the list has been vouched for by a friend currently living there (“pretty spot on” in his opinion)—the snails place is his recommendation, so you know who to blame if you need to 😉

Have a GREAT time; I know you’ll love it! Don’t forget to tell me your new favorites.

Quick Tips:

Navigation:

Causing trouble my first time driving a bike

Clearly causing trouble my first time driving a bike

Each building has their addresses on a sign above the door, which makes it easy to get around. Alleyways have really quirky addresses, but you can generally figure it out. The numbers work it’s way up from alleyway to street (to potentially even larger street). Find common words for road, street, district here.

Take motorbike taxis, or rent your own, but be sure to bargain for absolutely everything (for my China friends, even more so than China). You’ll find people friendlier than in China, but Vietnam is still a developing country so just keep an eye out. Vietnam is not a violent country by any means (I never felt like I was in violent danger), but do be careful of your stuff.

Motorbike thieves will try to pinch your stuff when you’re walking down the street. My friend got dragged by her shoulder bag late at night when a thief grabbed it while she was walking. My older expat friends have told me if this was the case, just drop your bag—it’s not worth it to get dragged. Never be scared, but just a heads up; keep things close to your person (bags/backpacks on your front, etc). I recommend a drawstring/cleat bag for this purpose.

Local Art

Vietnam also has some beautiful local art, infused with both local and French flavors from the colonial era. One of my favorite things to do was to wander around local art galleries. I bought a few beautiful paintings on silk, which I brought home for gifts (just keep them rolled up in a tube). Naturally I bought mine on the beach in Nha Trang when a lady came up to me and said, “Wanna buy some paintings?” But actually, it was a great decision, and I was able to bargain down to get three at a great price.

Badminton 

I lived on an alley off of Mac Dinh Chi close to the intersection of Dien Bien Phu. There’s a park across the street where they played badminton in the morning—so much fun. If you wake up early enough (before 7), you can join them before they take down the nets; they’re very friendly.

The Main Event: FOOD

Vietnamese food is AMAZING. As is their coffee. Street food is always better than restaurant food in Vietnam, IMHO.

Crabs are delicious!

Crabs are delicious!

  1. Quan An Ngon: A great “street food restaurant” that makes Saigon’s amazing street food in a more upscale, hygienic restaurant atmosphere; highly rated on TripAdvisor. I took visitors from out of town here! Go here first to better understand what you’re eating off the street.
  1. An ambitious friend amazingly finished this list of 100 Vietnamese Foods to Try from Wandering Chopsticks, which has brilliantly more adventurous foods. Here’s a list from CNN Travel that actually still has a great collection, but keeps it to 40. “Banh” means “bread,” but you’ll find that’s a pretty elastic definition. Eat any and all kinds of spring rolls, fresh are my favorite. Try all the sauces; find on any street corner. I’m all about goi cuon.
  1. Banh Xeo 46A: I LOVE Banh Xeo (fried savory “crepe”)! I didn’t realize until after I’d been there a few times that THIS was the place Anthony Bourdain recommends. It’s tough to find–you’ll wing through a ton of alleyways, but totally worth it. Locals also love it. You can also find it at the Quan An Ngon restaurant.
  1. Banh Mi—a great breakfast (or anytime) food. When I was there, one cost about $0.25.
  1. Bun Thit Nuong: This is my favorite kind of dish! I recommend any kind of “bun” (rice noodles), but bun thit nuong is my favorite. I got this meal for lunch quite often, as the lady right outside my window sold it in my alley, but you can find bun thit nuong in a lot easier to find places!
  1. Ganesh: If you’re tired of Vietnamese, try this Indian place. Best Indian I’ve had outside of India. Surrounding area also pretty cool for exploring.
  1. COFFEE! Vietnam made me love a good cup of coffee, so be sure to stock up before you leave. My recommendation is the weasel coffee, which you can find at Ben Thanh Market (the big market, near the backpacker’s district). You can find weasel coffee at less hectic places, but this is where I picked up mine. Make sure to pick up the traditional Vietnamese drip coffee filter; they’re super cheap, and make GREAT gifts (Get like five+. YOU get a filter; YOU get a filter)! My favorite way to have Vietnamese coffee is “ca phe sua da”—sweetened iced coffee. “So ubiquitous and so popular that it’s the one single Vietnamese term that expats here are even more likely to be familiar with than the local words for ‘hello’ and ‘goodbye.’” This is most likely accurate. Vietnamese coffee packs a big punch, and it’s consistency may be that of motor oil. Just do it.
  1. Cuc Gach Quan: Classic Vietnamese dishes in a uniquely artistic, easy-to-dine environment. “Expensive” for VN. Also good for out-of-town guests.
  1. SEAFOOD: If you like seafood, definitely try to have a seafood night. Snails make a really fun meal, as does crab. Just be careful and try to find one that’s been vetted by friends; I’ve known friends to have a nasty case of the runs after a bad snail meal. This one vetted by Migrationology seems to be all right, though I’ve never been. A friend in HCMC recommends Oc Dao. Fair warning, although super popular with the locals, this place may be a little challenging for travelers (language barrier).

Address: Ốc Đào Nguyen Trai 212/C79 Nguyen Trai St., Nguyen Cu Trinh Wd., Dist.1, Ho Chi Minh City, Ho Chi Minh City, Vietnam

  1.  Crab. I don’t have any particular recommendations as to where, but just go and find yourself some ohmygosh delicious crab. They sell it on the beach, they sell it at little shops.

Bonus: District 5 & 6 are Ho Chi Minh’s “Chinatown;” fun for food. There are many Chinese-Vietnamese families in the city and throughout the country.

Double Bonus: Craft Beer. Fairly new to HCMC. I knew Mike when I lived in the city; his blog (linked) shares info on the fledging craft brew scene here. Pasteur Street in general is a pretty awesome area. 

Life Is Far Better When You Extend A Hand: My Lean In Story

Speaking at Palms LA for the Lean In Second Anniversary Brunch

Speaking at Palms LA for the Lean In Second Anniversary Brunch (Image via Jessica Liu)

This speech was originally given as an off-the-cuff speech for the Lean In Beijing Second Year Anniversary Brunch at Palms LA in Liangmaqiao, and then posted on the Lean In Beijing WeChat account (follow at WeChat id: leaninbeijing) on Wednesday, July 29, 2015; please forgive any inconsistencies.

Life is far better when you extend a hand: The power of passing it on

I was just speaking with Alicia; her story inspired me, and made me think—we’ve all really been creating our own “lean in moments” for a long time. Every time we make a decision that takes courage, when we do something that’s a right decision for ourselves—we’re having a “lean in moment.”

I’ve now lived in Beijing for over three years, and my experiences with Lean In Beijing have helped me find and secure my “dream job,” and has allowed me to develop some of my most treasured relationships. But better still, these experiences and relationships have shown me the values, qualities, and character I want to express and embody in my own life.

The biggest takeaway in my Lean In experience is that life is far better when you extend a hand.

I read the original book Lean In while on vacation in the States, and loved it so much that I shared it with my Chinese girlfriends back where I was living in Beijing. I lent the book to friends and blogged about their reactions to the text. One of the original co-founders told me about a potential Lean In Beijing group forming when I told her about my blog. She immediately extended an invitation and said to come along to the first meeting—that’s the power of passing it on.

Life is far better when you extend a hand—and we are more powerful when we support each other than if we try to tear each other down.

The Nigerian-American feminist author Chimamanda Ngozi Adichie, whose TED talk “We Should All Be Feminists” was famously sampled on Beyonce’s ***Flawless, says, “We raise girls to see each other as competitors.”

We can see this highly dramatized in Hollywood movies such as Mean Girls, but it can happen so much more subtly in our own individual relationships.

Have you ever gotten jealous over someone else’s success? Tried to compete with other women over a guy? We’ve all been in “Mean Girl” situations.

Through my experiences and personal relationships I’ve developed with these women (gesturing to the women in the room), I’ve seen the power of collaborative relationships—the strength in supporting each other, rather than working to tear each other down.

There are so many practical ways we can support each other—forwarding and circulating potential job posts, revising work such as resumes, speeches, and other writing, connecting friends with potential interviewers, mentors, and other valuable connections. Pulling people into your network not only supports them, but it strengthens you. One of the biggest ways that I’ve seen how we can “extend a hand,” and pass it on, is simply to be inclusive and loving, supporting others in the ways that we’d like to be supported.

We joke as a group, because we say in our first year as Lean In Beijing, all of us left our jobs or found new ones. I ended up finding my “dream job,” not only through the emotional support of the group, but also through their practical guidance and support.

I want to also emphasize and celebrate the importance of including men in this extension. It was the actions of many men that helped me lean in. In particular, it was the practical support of two former male coworkers that showed me what I needed to do to find the next right job for me on my career path.

Goofing at Palms LA for the Lean In Second Anniversary Brunch (Image via Lean In Beijing)

Goofing at Palms LA for the Lean In Second Anniversary Brunch (Image via Lean In Beijing)

One in particular was patient enough to offer his insights and advice through the job hunt. He provided me connections to different agencies. He helped review and revise my resume. When I did get the interviews, he had me call him and coached me through a mock interview process—what a way to lean in together. That’s the power of passing it on.

One of his favorite topics to discuss was the salary package—and how to negotiate to get what you want. He showed me why I needed to ask for more, how much I should be asking for, and how to effectively stand up for myself and my needs.

It was being on the receiving end of these selfless acts that today, one of my greatest joys is being able to pass it on–helping others by sharing the knowledge and insights I have gained thus far from being a young professional working abroad.

It’s an act of power to extend a hand—and passing on your own knowledge and experiences only allows for more gratitude and abundance for you.

Instead of seeing each other as competitors, we can see each other—the entire brotherhood and sisterhood of humankind—as collaborators and teammates as we lean in together.

Find others’ Lean In Stories and more about Lean In Beijing on their WeChat account; follow at WeChat id: leaninbeijing.

The original Lean In Beijing circle meets with Sheryl Sandberg in 2013

The original Lean In Beijing circle meets with Sheryl Sandberg in 2013 (Image via Lean In Beijing)

Jill Abramson and Mean Girls

“She’s not even that pretty.”

I was hanging out with a group of new and old coworkers, and I found myself openly trash-talking a girl who had left with a flippant remark.

“I mean she has a hot body, but her face is ugly.”

“Morning after guilt” is simply the best, said no one ever.

“How did I get home?” “Where is my bike??” “They sharpied what on my face???”

Our firsts thoughts are often funny, unfiltered, and 100% where our minds should have been before we did the aforementioned guilty deed. In this case, there was no humor, just remorse.

“How could I have said that?”

Last week, I had gotten into an argument with a close guy friend of mine about Jill Abramson and her dismissal at the New York Times. Our “debate”: Was gender an issue in her dismissal? Me: Duh. Editing while female. Wage gap. A male editor would never be criticized for being “pushy.” Him: Downplaying the role of gender, indicating there are other factors that go into a compensation package, and he was saying that was probably what happened in the Abramson case. Despite the many wrinkles of the Abramson issue, including the way it messily unraveled–to paraphrase Jessica Goldstein, embarrassingly to the Times, being a media organization–this is not the main point of my story here.

The point is, quoting Tina Fey as Ms. Norbury in the now cult-classic Mean Girls, “There’s been some girl-on-girl crime here.”

The morning after our night out, I guiltily realized that I’d put down that girl I hadn’t even properly met.

By saying those things, I was just perpetuating a cycle, making it okay to judge, enshrining “attractiveness” as the #1 criteria for that judgment.

As someone who lives and works abroad, with friends from around the world and with backgrounds different from my own, I’d like to think I’m a pretty open-minded, non-judgmental person.

I’d also like to think I’m a feminist. I’m involved with a women’s professional development group that strives to give women the tools they need to carve their own paths and define their own version of success and happiness.

But I was not exactly pleased with myself when I recalled, “She’s not even that pretty.”

Before the Abramson discussion, my guy friends had been sitting with a college-age girl, but by the time we left for a different joint, she’d left.  I hadn’t spoken to the girl, or even learned her name. And when we bounced to grab some late-night snacks, I threw out my dismissive critique without a second thought.

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“I mean she has a hot body, but her face is ugly.”

Given the social context, what was the role those words played? In other words, if I’m so open-minded and feminist, why would I tear this girl down?

With my new, successful female colleague to whom I said the comment, I was “strengthening ties,” bonding with her by making fun of someone else.

With my guy friends present, the comment was as much for them, I was cutting this girl down to elevate my own status. If she “wasn’t that pretty,” maybe they’d see me as “hot.”

But I was just threatened, insecure.

The language we use to describe others has a large, lasting impact.

A well-circulated, but little-known fact is that the movie Mean Girls was actually based off of the book Queen Bees and Wannabes: Helping Your Daughter Survive Cliques, Gossip, Boyfriends & Other Realities of Girl World by Rosalind Wisemen. In high school, I’d picked up the book, sitting unread on my mom’s desk, and couldn’t put it down. I remember gaining a set of new vocabulary for things I “knew” but couldn’t form into my own words. Concepts like the “Act Like A Man/Woman Box” helped me understand some basic theory about social and gender dynamics.

And the hilarious Mean Girls script Fey cooked up conveyed powerful lessons in feminism. The gym scene intervention where Fey addresses the high school’s female population is particularly representative of Wannabes, delivering an impactful message cleverly woven into the humor of the movie (I mean, we both know audiences wouldn’t want to know they were receiving a positive education, amirite?).

“You’ve got to stop calling each other sluts and whores. It just makes it okay for guys to call you sluts and whores.” (2:40)

Later in the movie, Lindsay Lohan as Cady Heron says, “Calling somebody else fat won’t make you any smarter. Calling someone stupid doesn’t make you any skinnier. All you can do in life is try to solve the problem in front of you.”

Describing this unnamed girl as “not pretty” with an “ugly face” is of course less insulting than calling her a slut or a whore… but it’s not far off. Debasing her in front of others to lift my own status, it just further enforces the idea that it’s okay for anyone to be judged by their level of attractiveness—and makes it “okay” for women to be judged by something other than their job performance.

By treating others the way you would like to be treated, you help to circulate a superior model of communication and of life.

By cutting others down, calling other women “sluts and whores,” you’re just making it harder for yourself—and for gender equality in the long run.

Follow me on Twitter @Ginny Tonkin.

How does a shampoo commercial do badass and touching? At. the. Same. Time?

Boss v. Bossy.

Persuasive v. Pushy.

Dedicated v. Selfish.

A recent Pantene Philippines commercial matches common descriptors for men with common-held perceptions about women — showing that what’s seen as leadership for men becomes detrimental when it’s a woman.

Set against a cover of Tears for Fears “Mad World,” the ad is thoughtful and inspiring quite opposite to the way most commercials ironically belittle their most powerful consumers.

Not only did Pantene win with this empowering video, they are championing the push to end outdated stereotypes about women with their new campaign #WhipIt.

Their twitter feed is peppered with great shareable messages like this.

Cheers to Pantene Philippines for creating a campaign that’s creative and empowering. Makes us want to whip our hair back and forth. Sorry. Had to.

“Don’t let labels hold you back. Be strong and shine,” declares the video’s pre-fadeout take-home message.

See the original above or on the Pantene Philippines YouTube page.

 

How much money did we raise? Beijing Marathon Update

Thank you so much to everyone who contributed to the fundraiser for United Foundation for Children’s Health!

Participants raised over RMB 200,000, which was RMB 50,000 over the year’s target. Donations will be used directly to pay for the costs of three orphan’s surgeries.

Read more from the news piece on the Beijing United Family Hospital and Clinics (BJU) website (which yes, I wrote).

(Internet being slow today; sorry I can’t post more interesting photos!)