Category Archives: Personal

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!)”

When You’re Going Through Hell, Keep Going

I debated a long time whether to share this post. Would I come off as weak? Too vulnerable? Incapable of handling the inconsistencies and waves that come with life?

Well, this kind of thinking is actually just rubbish. The fact is that most people deal with overwhelming life challenges, and it’s our capacity to weather and learn from these experiences that help us grow, form us into the people we want to become, and in turn allow us to help others.

I decided to post, to process my own thoughts, to express gratitude to those who have supported me, and also to support others going through similar challenges. If you’re a stranger reading this on the Internet, know that countless others go through really confusing, crappy times, and that you’re going to come out of this stronger.

In the end, I’m actually grateful for it. I’m stronger, wiser. More compassionate with myself and others.

I’m also grateful and very lucky that I’ve had a super supportive workplace and boss, a patient and loving family, and friends both near and far that have helped me through this process.

What is going on? Explain plz already.

For more than half a year, I’ve been dealing with challenging health issues that were varied and complex. Without going into extreme detail, issues ranging from throat infections, a surgery, and a stomach that refused to process anything, left me, a normally buoyant and energetic person, exhausted both physically and emotionally. It was hard for me to go out without feeling exhausted, which made me even more sad, isolated, and frustrated.

On top of this, old and new running injuries flared up, limiting the ways I could exercise and even my general mobility for a while.

In short, I was a wreck.

I’ve always seen myself as a fairly “tough, strong” person. I’m proud (possibly too proud) that I’ve been able to live and travel abroad in multiple foreign countries by myself, without family or much of a safety net. I’ve done athletic and endurance races, including a triathlon, a vertical run, and a half marathon. Even when an old employer called me tough, looking to criticize my character, I took it on as a mantle of courage and defiance. When others are down or sick, I’ve been happy and proud to be able to take care of them.

But when I’m personally feeling unwell, whatever “toughness” I have just falls apart. Being sick sucks.

This is what I felt like for several months, not completely healing after a surgery, not understanding what was going wrong with me physically, and not having the right, consistent medical support to figure it out. Would I ever heal completely? Would I ever feel “normal” again?

It’s very challenging NOT to feel like a victim when everything feels out of your control.

But, “When you’re going through Hell, keep going.”

When you're going through Hell, keep going.

When you’re going through Hell, keep going.

This Winston Churchill quote has been one of the best pieces of advice I’ve received, from a guy who’s been there, my father. A renal patient for over 12 years and now a kidney transplant recipient, my dad has been through more “Hell” than I think any person should have to deal with. But you know what? He’s one of the most compassionate, funny, mentally strong people I know, and has been an excellent support and example while I’ve been sick.

How do we “keep going” when we don’t see a way out of “Hell?”

These are a few things that have been particularly useful to me. I don’t do all of these very well all the time, but each day is a chance to improve.

1. Cultivate a “Warrior Vs. Victim” Mentality

This blog post was particularly helpful when I realized I was wallowing too much in self-pity (heyyy, we’ve all been there, ya?). Why is this happening to me? Didn’t I already live a healthy life? Aren’t I a “good” person? What have I done to “deserve” this?

Being a victim can mean feeling helpless, but a way to combat that feeling is to change your perception.

I loved the “how-to” list blogger Jenny Sansouci posted about how to strengthen your “warrior mindset:”

  • Make self-care your primary function.
  • Remember to ask for help. Find your personal team of healers – maybe it’s your friends & family, a therapist, support group, yoga instructor, spiritual practice, chiropractor, juicer, etc.
  • Find ways that working through your own situation can help others, and help someone.
  • Say to yourself, “this may be uncomfortable, but I know it’s a radical assignment for growth.”

I loved the idea that, “Things may not always be easy, but the choice we do have at each second is to be willing to see things differently.” –This is what having the warrior mentality is all about.

I also loved the idea that by working through your own pain, you could also be helping others. Be excellent to each other–each interaction is a chance to help someone else. At the same, don’t be afraid to put yourself first–it’s ok to be a little selfish to help you get better. This is your own health we’re talking about here.

2. Express Gratitude

This used to bug me whenever someone told me I needed to count my blessings or express more gratitude. Wasn’t I already a grateful enough person damnit?? …Ok, point taken.

It wasn’t until I was the phone with a good girlfriend of mine, and she suggested that I try being more grateful that I actually took it seriously. Sometimes when we’ve heard something so many times, it takes hearing it from an unexpected source to make an impact.

How can we be grateful? Instead of the generic advice, “be more grateful,” it’s been helpful for me to take a look at specific exercises, and these two things are particularly helpful:

  1. Write three things you are grateful for everyday. What I do (when I actually do it), is list in my journal at least three things that happened to me today that I was grateful for. Sometimes, it’s easier to list three people that you’re happy to have in your life, or three people that impacted your day positively.
  2. Write an email or card to someone to say thanks. This one is always fun. Take time out of your day to write an email or color a thank you card to give to a friend or someone who’s made an impact in your life. Because it’s often unexpected, both you and the recipient gain the benefit of feeling loved and grateful.

Sometimes, it’s more powerful to talk through your gratitudes–these exercises also work well with a friend in person or over the phone.

3. Recognize progress, no matter how small

When everything is going wrong, it’s hard to recognize when things are going right. When speaking with my doctor about my condition, she emphasized the importance of taking a step back. What’s the overall trend? Am I healthier today than I was last week? A month ago? Three months ago?

Some days will be better than others; some days will feel like major set backs. Recognize your own progress. Celebrate it, no matter how small.

At one point, even yoga was physically taxing for me. Each morning I started doing a yoga video, and I could feel myself getting stronger. I celebrated the strength I could feel in my legs, the flexibility returning to my body, the power in my arms to support myself.

Whatever progress you’re making, recognize and celebrate it. You’re getting there.

4. Be gentle with yourself

One of my favorite quotes is from that American movie classic, Bill & Ted’s Excellent Adventure, “Be excellent to each other.” What I needed to know at the time, is that I needed to return that favor to myself, to “be excellent”–and not so hard–on myself.

While I’ve always been proud of being able to support friends and others when they are dealing with physical and emotional challenges, sometimes, we need to turn that attention inward and channel that energy into self-care and self-love.

Maybe you missed a personal goal. Maybe today was just the pits. Maybe you see others killin’ it on social media, and you just don’t think your life adds up.

Do not compare yourself. Do not compare others. Each person’s life and situations are unique.

When you’re used to excelling, rising to the challenge, and exceeding expectations, this can admittedly be harder, as you put too much pressure on yourself to “normalize” the situation. When you’re used to “toughing it out,” it can be hard to recognize that the remedy will come with time and patience.

If you catch yourself thinking less-than-supportive thoughts about yourself, think about how you would speak to a friend. Would you say those things to them? To your younger brother or sister? What would you say to your best friend going through the same situation? You would be supportive. You would be loving. You would be forgiving.

One time, I wrote myself an email in the same way I would speak to a friend. The effect was immediate and positive. Be excellent to yourself.

5. Forgive

This one is admittedly my hardest. I know my being sick affected relationships I was in, and I was holding onto some hard feelings that didn’t do anyone any favors.

Your physical health is tied to your emotional and mental health.

Let it go. Even when you feel wronged, righteous, or justified, let it go.

—

I’ll leave you with a story a friend shared with me about grief. While I’m not sure where the story originally came from, when you’re going through Hell, it’s helpful to know that “Scars are a testament to life.”

The two things that stuck most with me were:

  1. “Scar tissue is stronger than the original flesh ever was.”
  2. “The waves never stop coming, and somehow you don’t really want them to.”

I’m not completely out of Hell, but I’m well on my way. Life will always be filled with challenges. But it’s the way we respond, weather, and grow from these experiences that help shape our character. Be brave and be kind.