Why Don’t I ever see you Dancing? What is EDS?

I wanted to write an article to answer the constant question I would get at the social dance I organize, “Why Don’t I ever see you dancing?” I also wanted to write an article about Ehlers Danlos Syndrome. But I realized the answer to the question “Why don’t I ever see you dancing?” is the same as the answer to the question, “What is EDS?” They are the same article.

CN: chronic pain, descriptions of injuries

It must be strange for you. You arrive at my weekly tango dance. I smile and say hello, I take your money. I’m there hosting every week for the full length of the event. In the middle of the week, you’ll get emails from me detailing special events, you’ll see my facebook posts and photos that I took of the dancers. Every Tuesday, you’ll dance to the music that I’ve chosen, and at the end of the night you’ll say to me, “Thank you so much for the music, I really enjoyed it.” You think to yourself, “she must put in hours of work every week to keep this dance running.” And when I smile and hand you your change, I can see the unspoken question in your eyes:

“Why don’t I ever see you dancing?”

Some background information: I started dancing tango in 2010. My friends brought me, they danced with me gently and generously, and when I had sort of gotten the hang of it, they walked me over to the best, friendliest leads and encouraged me to dance with them. By the end of the night, I was hopelessly addicted. It was a Tuesday night. I’ve rarely missed one since and now, I run the event.

In late 2014 I stopped dancing.

Starting in the summer of 2014, I had pain in my hips and back for months that gradually increased, but I managed to dance some anyways. Then I discovered that I had injured my sacrum and my physical therapist suggested that I avoid dancing for at least a few weeks. She assured me that I’d be back on the dance floor soon.

Weeks turned to months and I didn’t get better. It took months of frustration, pain management, and experimenting with different treatments with only marginal improvement before I found a name for what I was experiencing.

I have Ehler’s Danlos Syndrome. Or, I probably have it, but getting diagnosed would require seeing an out-of-town geneticist, I don’t drive, and as long as there’s a chance that pre-existing conditions could once again prevent me from accessing insurance coverage, there’s an advantage to staying undiagnosed.

What is EDS, or Ehlers-Danlos Syndrome?

Ehler’s Danlos Syndrome, or EDS for short, is a connective tissue disorder. It means that anything in my body that’s made of collagen is likely to be stretchy and weak ie: joints, skin, even organs. EDS can cause chronic pain, muscular skeletal issues, skin problems, digestive issues, extreme food allergies, and has even been tied to increased anxiety.

From the outside, EDS often looks like a collection of common, unrelated health problems, rather than one underlying health condition. As a result, it is frequently misdiagnosed. The average amount of time between first symptoms and diagnosis is 10 years. I got lucky and found out about it six years after my first symptoms, and just 1 year after my symptoms became severe.

There’s a common saying among medical practitioner’s that says, “When you hear hoofbeats, think horses not zebras.” It means the common and boring answer is more likely to be true than the rare and exotic ones. People with EDS get treated as if they are horses, when in fact they are the zebras. For this reason, the zebra is the symbol used by the EDS community.

For me, EDS primarily manifests in the form of chronic pain, frequent injuries, and low physical stamina. It also means that I have several food allergies to accommodate, sinus problems, I need 9-10 hours of sleep a night, and I deal with chronic anxiety and depression. I have incredibly sensitive skin that is prone to rashes, cracking, chafing, and scrapes and cuts. I use hypoallergenic soaps and shampoos, lotion my hands any time I was them, anti-chafe balm in all weathers, and I have to change the positions of my band-aids regularly to prevent them from forming rashes.

EDS can also cause a condition called POTS (Postural Orthostatic Tachycardia Syndrome) , where because of my stretchy veins, pumping blood through them takes a little extra effort, and my blood pressure reacts more dramatically to changes in physical position or temperature than most people’s do. Untreated, it can lead to sudden drops in blood pressure that can cause fainting or loss of consciousness. Funnily enough, I haven’t been diagnosed with POTS because I instinctively figured out how to treat the milder version I have on my own: through drinking about 90 oz of water a day and eating three times as much salt as most people do. As long as I stay on top of my water and salt intake, my blood pressure stays within a safe range and all I have to deal with is the experience of my heart pounding every time I lay down, or occasionally when it gets really hot outside.

EDS is usually an invisible disability, which means that even though I have enough physical limitations to be categorized as disabled, I look pretty indistinguishable from an able-bodied person. Unless you see me wearing all my braces, or watch the way I carefully and slowly walk up a flight of stairs, you might never realize the extent of my limitations.

Because my disability is invisible, and because EDS isn’t a very well known condition, it makes it hard to explain to someone why I don’t dance. It’s not really one cause, but hundreds of little, medium, and big causes that are always changing in size and relevance.

Unpredictable Joints

Imagine you’ve sprained your ankle and so you need to walk with crutches for a few weeks to allow it to heal. Imagine every time you put weight on the crutches, the bottoms of the crutches sink into the ground about a centimeter. With each step, the center of the length of each crutch bends under your weight just a little bit. But the amount and direction that the crutches sink and bend are different with each step you take. This is what moving with EDS feels like.

Because the connective tissue in my joints is weak, all my joints bend farther than they should. This is colloquially known as being “double jointed” but it’s actually only one joint that’s overextending or slightly dislocating. This condition is called joint hypermobility.

Imagine a door on it’s hinges. The hinges allow the door to swing back and forth, but the door doesn’t have unlimited range of motion. It can’t wobble up and down or side to side, and doors usually can’t open wider than 180 degrees. So, the hinges allow the door to move but they also keep the door stable.

If the hinges were loose, the door would become crooked, leaning forward or backward, or side to side. The door wouldn’t fit properly in its door frame and could break if opened or closed the wrong way.

It’s fairly common for people to have one or two joints that are hypermobile. But for me, all of my joints are loose hinges, and some are looser than others. Instead of providing me a stable range of motion, my joints bend in all sorts of directions they aren’t supposed to. When I move my body, I have no guarantee that my joints will hold the position I’ve told them to go, when they encounter stress. Frequently, I overextend my joints without noticing because it’s so effortless to do. But my bones and muscles don’t overextend in the same way, meaning my joints can easily disrupt the structure and placement of my bones and muscles, leading to pain or injury.

Current Injuries

As of this blog post, I have a total of four injuries that I am recovering from.

For months, I had pain and muscle spasms in my left shoulder blade from repeatedly reaching around the front of a hand truck and pushing down on the heavy boxes to get the hand truck moving. I don’t know what finally pushed it over the edge, but one day I came home and everything from my shoulder blade to my armpit ached terribly, and no amount of massage could calm it down.
At work, I was pushing some crates across the floor when they fell, and I fell on top of them, hitting my right ankle on the edge of the crate and jamming my left knee back farther than it should go. My ankle recovered in a few weeks but pain in my lower back and hips gradually increased over the next several months until I could barely walk. I discovered that I had overextended the left side of my sacrum about four months later. It required physical therapy re-adjustments every 2-weeks and caused me excruciating pain anytime it drifted out of alignment.
One day, as I was getting ready to leave the house, I leaned across my bed to fetch some plates. I always lean with my hands closed into fists instead of splayed out, because I have wrist pain from repetitive stress at my job. One moment, my fist was solidly holding me up, and the next moment, my wrist collapsed forward, I fell, overextending my wrist joint with the full weight of my body on top of it. I strained the muscle in my forearm and temporarily displaced a few bones.

My arm healed most of the way in 3-weeks, but I had to make sure never to overuse it for the months that followed. About four months passed, and the pain in my arm increased again, so much until even moving my hand a little bit sent shocks of pain up my arm. Massage did nothing. After an emergency visit to my physical therapist, she discovered that my shoulder muscles had shifted and were blocking part of my thoracic outlet. The thoracic outlet is a pair of holes that regulate the fluid in and out of your arm. One of the two holes was blocked, and as a result, my arm was filling with fluid that couldn’t get out. I spent two weeks unable to work, cook, clean, or use my arm in any way.
It’s unclear why, but one day my left leg was sucked up into my torso, and it continued to retreat until it was a full inch shorter than my right leg. I was standing for most of the day because I was working. Because your body wants to keep your eyes level, it adjusts to uneven limbs by extending other areas. My body chose my ankle. Unfortunately, because of my weak joints, the arch in my foot is naturally collapsed when I put weight on it, and my ankle collapses inward a bit too, meaning my ankles are always in a state of slight overextension. In order to stretch the extra inch, in addition to its normal overstretched state, my ankle sprained itself, slowly, over the course of hours, while I stood still. I left work two hours early because it felt like there were knives being stabbed into my foot.

To complicate things even more, the insufficient connective tissue that I have doesn’t rebuild well, which means that if I over-stretch or damage a joint, it can take years to heal, if it does at all. Once I’ve overextended a joint, it will have a tendency to move in the overextended pattern for years afterwards. My injuries listed above are from 2013, 2014, spring of 2016 and winter of 2016 respectively. I continue to have to work around and treat all four of them, every single day and neglecting any of them can lead to a relapse.

There’s no guarantee how long I’ll go before I’m injured again, but it’s a question of when, not if.

Pain and Tension

Pain is a very large part of the experience of EDS, but not all of my pain comes from my injuries.

In order to compensate for my hypermobile joints, my muscles tense and lock-up to try to keep the joint from wobbling, to sort of substitute as the structure my joints are supposed to provide but can’t. But muscles aren’t supposed to do this, which means I am constantly battling tension everywhere I have muscles.

My joints are also very susceptible to repetitive stress, to the point where doing the same non-intensive motion over and over for just five minutes can be painful. Simple gravity makes my joints tired from the stress of holding me up or doing simple tasks. As a result, in addition to my four injuries, I usually have pain in my feet, knees, mid back, shoulders, neck, chest, elbows, and wrists.

Because my joints are so unstable, the arrangement of my muscles, joints, and bones, and how they interact with each other is unpredictable, which means the type of pain I’m experiencing and the location of the pain is constantly changing. I can count on it being fairly reliable in the location of my injuries and in a few areas that take on the most physical stress, like my feet and wrists. But it’s common for me to go about my day and suddenly feel a sharp twinge in an area I’ve never had an injury before.

The scary part though, is because I injure so easily, and unexpected pain is common, I don’t always know that I’ve injured myself right away. If I bend over and feel a sharp twinge in my knee, I have absolutely no way of knowing if that pain will last 15 seconds, 15 minutes, or if I’ll spend the next two years managing the resulting complications.

Management and Treatment

Taking care of my four injuries, managing my regular non-injury sources of pain, and preventing future injuries is a lot of work.

EDS has no cure, however regular muscle strengthening teaches my muscles to do the work that my joints can’t do, in a healthy way. Rather than holding my joints stable with tension, it allows my muscles to stableize my joints through strength. But I must always toe the line between enough activity to continue strengthening my muscles, and enough rest to keep from wearing myself out. The consequences of overdoing it and not being active enough are equally serious.

I receive physical therapy to re-align my body and to help strengthen my muscles, once every two weeks. I get a massage to decrease my baseline tension once a week. Every single morning, I do physical therapy exercises, roll on a foam roller for 20-minutes, and take a hot shower to limber up my muscles. This routine takes about an hour. I use various types of balls and rollers on my muscles several times a day to keep them from getting too tense. I have four different braces that I wear to support my joints in high stress situations. Any time I’m standing, I wear running sneakers with orthodic inserts, and I never wear any other type of shoes. I take pain medication every single day.

If I skip any of these treatments, my pain drastically increases and can sometimes send me into a spiral of pain and tension that takes weeks to undo.

But staying on top of a dozen forms of treatments isn’t enough. My stamina for physical activity is extremely low, and I have to manage it carefully. That means that some days I have to choose between doing laundry or making dinner, because doing both will mean I won’t be able to go to work tomorrow. This constant management of resources is often referred to as Spoon Theory. In order to make my physical resources last as long as possible, I alternate the types of movement or positions I’m in. On my days off, I spend 30-60 minutes sitting, and then 15-20 minutes standing, and then back to sitting again. If I’m having a bad pain day, I decrease my standing time and increase my sitting time.

I also have to track the alignment of my body and which muscles I’m using to do tasks. Every time I bend over, I have to breathe in, and when I stand back up, I have to breathe out and engage my core. When I walk, I consciously swing my arms, engage my butt muscles as I breathe in and engage my core as I breathe out. I avoid twisting or leaning or diagonal reaching, and take small steps forward or to the side instead. I avoid kneeling or getting on my hands and knees. Jumping and running are out of the question. Every movement is intentional. Any mistake can take months to fix.

What Does That Mean for Dancing?

The most basic move of tango is walking, which for most people is simple and non-taxing, but for me, requires concentration, short strides, and I can do it for a maximum of 10 minutes before I need to stop and rest. To complicate things, as a woman I have the most experience dancing the follow’s role, which means walking backwards and that my movements are largely decided by someone else, who doesn’t know the complexities of my body.

Any twisting motions, quick athletic motions, or unpredictable motions are dangerous for me, and just doing simple movements like front or side steps is tiring and requires a lot of focus on my part. Sometimes even those simple movements are too painful to do repeatedly. If any of my injuries have been particularly problematic recently, I have to limit any extra use of these part of my body to keep the injury from getting worse, and dancing definitely falls in the category of “extra” when compared to working or making food.

The margin for error with my body is so small, and the consequences are so high, that the majority of the time, it’s not worth the risk to myself to dance, even if it doesn’t currently hurt that much to do.

Will I Ever Dance Again?

Will these conditions change? I don’t know. It’s likely that EDS is something I will have to manage for the rest of my life, and future injuries are unavoidable. However, physical therapy has a long term cumulative effect and sometimes it can take years to build up to your full strength, particularly when new injuries or problems crop up on a regular basis and slow down progress. It’s possible that sticking closely to treatment and taking care of myself will mean injuries and side-problems will become less frequent, and small amounts of dancing will become more possible.

I do dance very occasionally, usually only one or two songs in a night. I have a small group of people whom I trust to listen to my limitations and follow them closely, and if I really really want to dance, I will have small gentle dances with those people. I’ve also found some success in dancing the leader’s role, because it gives me more control over the shape of the dance and the ability to rest or be more active depending on how my body is feeling. I’m not very experienced at leading, and I’m not currently able to attend lessons, so that keeps me limited to only a few simple moves.

The hardest part about EDS is the unpredictability. I have no idea what my body will be like in two years. The words “worse” or “better” are insufficient to describe how I’m doing at any given time, because there are so many variables and so many body parts healing or suffering at different rates. The hardest part about EDS is not knowing if I will eventually be able to dance regularly again, or if I should accept where I am now as my lot in life, and love my level of ability for what it is.

And loving me and where I am right now is most of what I want from the people around me. Understand I have limitations that you can’t see. Understand that where I am today might not be where I am tomorrow. If you’re overwhelmed by a desire to help me in some way, ask what you can do rather than guessing, because no one knows better what my body needs than I do. To start, you can advocate against ableism. And you can donate towards EDS research if you have the resources to.

About the writer: Kella Hanna-Wayne is the creator, editor, and main writer for Yopp. She specializes in educational writing about civil rights, disability, chronic illness, abuse, and Dissociative Identity Disorder. Her work has been published in Ms. Magazine blog, The BeZine, and Splain You a Thing and in 2022, she released a self-published book of poetry, “Pet: the Journey from Abuse to Recovery“. You can find her @KellaHannaWayne on Facebook, Instagram, Pinterest, Medium, and Twitter.

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