At Goth Haus LA we like to give people platforms to have their voices heard. This article is important and will go over what a medical zebra is as well as highlight what Ehlers-Danlos Syndrome is and its subtypes. I am so thankful that these two amazing hoomans who I get to call my friends are willing to share their experiences and talk about EDS/HEDS to educate all of us. Thank you so much ya'll! This article is entirely written by Dragon and Nyx Linnae. I want to thank you both for being so open and vulnerable sharing your stories with the world, and educating all of us! -Batz
Ps, we hope you learn something here and take it with you, and share it with others!
From Dragon
First of all, what is a medical zebra? A medical zebra can refer to any medical diagnosis that can be seen as surprising or unexpected compared to a more common or typical diagnosis with similar symptoms. These diagnoses are normally rare conditions, and are classified as zebras because medical professionals are often taught to look for a more common and usual diagnosis than a surprising one. In other words, “when you hear hoofbeats don’t expect to see a zebra.” Sometimes, however when you hear hoofbeats it really is a zebra, and this is the case for many rare chronic conditions. One collection of rare conditions in particular have adopted the zebra as their mascot, those are Ehlers Danlos Syndromes.
Ehlers Danlos Syndromes or EDS as they are often called are a collection of 13 heritable connective tissue disorders. Each type of EDS has its own genetic cause which creates unique symptoms and diagnostic criteria. Though they have their own unique genetic causes, each type alters the instructions for collagen production and results in defective collagen. Collagen is a primary protein in connective tissues which provide structure, support, and strength throughout the body. Connective tissues are found everywhere in the body including in skin, muscles, tendons, ligaments, blood vessels, organs, gums, eyes, ears, and many more locations. Because of this, EDS patients have compromised connective tissues which create a long list of varying symptoms. A good analogy to understanding this is: If one builds a house with faulty materials, say half the necessary wood or with soft aluminum nails, it is certain there will be problems. Some problems are more likely to show up than others, but because those materials were used everywhere and are not necessarily visible, one can be surprised by where a problem shows up or how serious it is. The problems that are more likely to occur are symptoms that are common across all types of EDS. These characteristics are stretchy, velvety, skin that bruises easily, and joints that are extremely flexible, unstable, and dislocate or subluxate (partially dislocate) frequently. The other unpredictable symptoms are unique to each individual that has EDS. This is also why the zebra is the symbol for EDS, because just like no two zebras have the same stripes, no two people with EDS are identical.
Dragon's experience
When I think about my childhood, I have fond memories of being active and involved in a variety of hobbies. I also have a lot of memories of having braces or vet wrap (it’s better than ace bandage plus it comes in cooler colours) around various joints. One of things that drew me to physical activities like martial arts and dance was the fact that I was flexible and able to perform moves others couldn’t. I would often put my body in weird positions like both feet behind my head and walk around on my hands because I could, and it would freak people out. I had no idea that what I thought was normal was abnormal. For me dislocating something, popping it back and putting a brace or vet wrap on it was normal. It was normal to see my family members with braces or hear comments about knees or shoulders dislocating throughout the day. It wasn’t until I was in middle school that I heard the term Ehlers Danlos for the first time. During a visit to the doctor for tendonitis in my arm caused by a wrist dislocation I saw a doctor that asked if I had Ehlers Danlos Syndrome. I had no idea what she was talking about. She said it was a rare condition and she wondered if I had it and ran the Beighton test on me to test for hypermobility. I tested off the charts and was the most hypermobile patient she had ever seen. She told me that I most likely had Ehlers Danlos Syndrome and that I needed to build up muscle tone to maintain strength and hold my joints in place. I wish I could say that after having a name for my condition that everything improved, but having a name was only part of the battle.
Since EDS is a rare condition, many doctors don’t know what it is, much less what to do about it. This comes with many challenges. Most of the time doctors don’t take me seriously when I say I have EDS they either believe it’s too rare or they disregard my complaints as me being a “hormonal girl”. I continually have to advocate for myself and fight with doctors to acknowledge my condition. For over two years I practically lived in the doctor’s office suffering from bouts of dizziness and loss of consciousness, only to find out that I suffer from an autonomic disorder that is linked to EDS. If more people knew about EDS and took it seriously, I could have had answers and received help with managing my symptoms sooner. Despite having both conditions in my chart now I still struggle with doctors and their understanding of EDS. I have frequent chest pains due to my musculoskeletal system moving around which is normal for me, but when I had to get a new primary care physician, I told her about my chest pains, and she freaked out. She saw I had EDS and began insisting that I needed to be rushed to a cardiovascular hospital because I was suffering from an aortic dissection. I felt like I was being treated by doctor Google because when you look up EDS aortic dissection is one of the first things to pop up as a medical warning. And it’s true, aortic dissections can occur in EDS patients, but that’s associated with the vascular subtype and the doctor should’ve known this. More doctors should be aware of EDS and the different subtypes to better diagnose and treat those with the condition.
Doctors are sadly not the only people that don’t understand Ehlers Danlos. One of the biggest struggles I face with this condition is the wear on my relationships with others. Since I don’t know when a dislocation will occur, or how long it will last, it can be difficult to make plans with others. I have had to cancel plans more times than I can count, which can be difficult for able bodied people to understand. Some people become angry and make you feel guilty about cancelling plans, when you’re doing it because your body physically cannot do what you need it to. When my condition worsened in high school, I lost what I believed at the time to be friends, because I was unable to be present with them as much as they wanted. At the time it was very difficult because I wasn’t doing well physically or mentally and losing friends just made it worse, but the experience taught me a lot about others and myself. It taught me that I deserve better, and that true friends will be understanding of my limitations and not abandon me because of something as trivial as cancelling plans to take care of myself. True friends will understand and respect me and my health over plans we had made.
Work and school are also difficult to manage with this condition. I never know day to day how I will feel, or if my body will cooperate or not. I have had to take time off school entirely to take care of my health, which was both a physical and mental struggle. While at community college I made several friends and watched them leave and graduate from universities while I had to stay behind because my health was poor. I would often feel like the world was passing me by while I was trapped as a prisoner inside my own body. What helped me with this was seeking the proper mental health care, as well as meeting others struggling with chronic illnesses, and my fellow zebras. I was able to connect with others that understood what I was going through, who supported my efforts as well as offered recommendations for ways of managing my condition. The EDS community is a close-knit group bonded together by the struggles that we were born with, and I’m honoured to be among the strong people that are within it.
May is Ehlers Danlos awareness month, and I hope that by sharing my story the lives of others will improve. The phrase that I hear most frequently is, “You don’t look sick.” To this I ask, “What does sick look like?” Many of those that suffer from chronic illnesses mask their true feelings and don’t show what is happening. They smile, say they’re fine and continue to push through the pain. They suffer in silence, invisible to the world around them. My hope is that by sharing my story, we can shed light on invisible illnesses so that others will not have to suffer in invisible silence anymore. So, to those reading this, I ask that you be more understanding towards others, and their struggles because you never know what someone else is going through. To my fellow zebras, I ask that you be kind to yourself. Know that even if the only thing you accomplish today is waking up, that is valid, and you are still enough. You are stronger than you think
From Nyx Linnae
"In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions." - Ehlers-Danlos.org
Nyx's Experience
In youth I faced constant, chronic joint issues.
My childhood memories are spattered with countless instacare visits and x-rays, shoulders dropping out of sockets or ankles getting rolled multiple times a month, wrapped in ace bandages and mottled like a calico with deep purple bruises after just about any activity. As a teen I started ballet and, during a cobra pose stretch, a classmate commented that I looked "gross" and "freaky." I glanced at my reflection and was shocked to see my back was nearing a 70° angle from my hips, while I felt absolutely no stretch or strain.
This was the moment I discovered my flexibility was, in fact, preternatural.
From then on, this flexibility became a party trick of sorts. Anyone who knew me knew I was bendy. At bars and clubs, in photoshoots and performances, it was near guaranteed I would shock onlookers with a severe back bend or sudden split. Little did I know, this flexibility was actually a sign of a rare condition that would prove to be detrimental in the grand scheme of things.
The focus on flexibility without having the strength to protect my joints was wreaking gradual havoc on my body.
It wasn't until my early 20s that I learned there was a name for this condition. A friend was holding a dance class and took notice of my hypermobility. After class they started asking questions about other symptoms - as I answered yes to every inquiry and gave examples they exclaimed "I knew it! You have Ehlers Danlos like me!" For the first time in my life I felt like I wasn't dealing with this strange mystery condition alone, and armed with the name I was finally able to research better ways to mitigate harm, as well as explain to others what my disability truly entailed.
From there all the puzzle pieces fell into place. Bruising, stretchy skin, frequent injuries, joint pain, and hypermobility all made sense. My dermatographia, fatigue, heartburn, and dizzy spells were common comorbidities. I learned the importance of protecting myself at the first signs of a flare up, or during activities that are likely to cause an injury.
This protection often comes in the form of stabilization and compression. I'm more attuned to my body than ever before, and can usually tell when a joint is going to give out before it actually does, so I can put a brace on the affected joint and carry on as normal. I have support items for my frequent problem areas, some of which are incredibly discreet - Well fitted underbust corsets make for incredible back support, black compression gloves keep my wrists and hands protected, sturdy, tightly laced boots are great for stabilizing ankles. Nobody bats an eye when the goth chick arrives in a corset, fingerless gloves, and boots, and I don't have to be constantly answering the "What happened to your [insert braced joint here]?" question. Knee, shoulder, or elbow issues are harder to treat discreetly so I get a lot of questions when those are acting up, my go-to quick response has become "I was born wrong" but if someone is truly curious I go into further detail. I keep it lighthearted and easily digestible, using phrases like "I have a disability which affects the connective tissues in my joints, sometimes they would just rather be ouchy Jell-O instead of knee or elbow."
Where does EDS get particularly devastating? Surprise injuries, especially when they affect my employment. I once lost a job because my shoulder dislocated mid-shift, and with my dominant arm in a sling I wasn't able to fulfill my job duties effectively for about a week.
Last October I badly sprained my ankle, and about three days later both of my knees gave out. I bought a wheelchair on Craigslist (Cue TKK's "Sex On Wheelz") so I wouldn't have to miss work, but my boss quickly became frustrated with the fact that I couldn't reach the top shelves, took too long to navigate the store due to seriously lacking wheelchair accessibility, and with the height of the registers and narrow clearance behind them I wasn't even able to cashier. She threatened demotion if I wasn't out of the chair within a week. Her contempt was palpable when I told her I didn't know how much longer I would need it. I came into work with just braces and a cane a few days later, she was thrilled - but an hour into my shift I couldn't walk any more. She wrote me up.
With EDS being a disability they've never heard of, most employers assume I'm lying to get out of tasks. It can be extremely difficult to keep jobs, especially physically demanding ones, because of this. Without a formal diagnosis, which is hard to get when doctors aren't willing to even consider anything but the most common answer, I don't have the disability documentation required to fight things like that. This seriously affects my quality of life and can be incredibly disheartening.
The other major frustration is input from able-bodied people. Countless have told me I just need to exercise more or lift weights, and they don't understand when I tell them I need to partner with a professional physical therapist first to make sure I'm exercising properly and not causing more damage. Some suggest I actually have more common ailments because some of my symptoms sound similar, and they propose treatments. They don't listen when I tell them it's a different condition and some treatments, which I've already tried, aren't effective. I know they're trying to be helpful and I try to be patient with them, but having to explain over and over again while they suggest things I've already looked into extensively takes its toll.
The absolute, top tier, worst of the worst phrase that makes my blood boil is "You're too young too have joint pain, just wait until you're my age." A customer once said this because I winced as my elbow subluxed in the middle of putting a heavy vase in her cart. My retort came through a tight, gritted perversion of my usual customer service smile, "Lifelong disabilities don't care how young you are." A manager witnessed this and came to find me in the breakroom afterwards, threatening corrective action as I held an ice pack to my arm, mascara streaked down my face as I sobbed from the pain. She told me to wrap a bag of frozen broccoli around it with an ace bandage and get back to work. I clocked out for my lunch break, never to return.
All that said, EDS is an inherent part of me and I still like to celebrate the parts that I can.
I love the community I've found with other zebras, the understanding and relatability makes it all much more bearable. We can make memes and crack jokes and everybody just gets it. We share treatments we've found for things that aren't as simple as a trip to the athletic brace aisle of your local CVS - like using saran wrap to stabilize a hip. EDS awareness and finding friends with the same struggles took away the gut wrenching feeling of being a "freak" with no explanation for it.
I also still love being able to utilize my hypermobility. My ribs are more flexible than most, so if I want to dramatically tight lace my corset for a picture or performance, I can do that relatively easily for short periods. There are contortions I can do that most models wouldn't even be able to dream of achieving. I let the photographer know I have a pose but can't hold it for a long time, we set up framing, I get into position, and they quickly snap the photo so I can return to a safe stance. It has resulted in some breathtaking images and my signature pose has become one I lovingly refer to as "wearing my foot as a hat."
As a creative who often uses my body in my art, hEDS gives me a vast world of possibilities to explore, and I appreciate that even if it has its downsides.
To wrap up, I'd like to leave you with some advice.
To anyone who struggles with a disability: Find your community. Find the things only you can do, and embrace them. Find workarounds and mobility aids for the things you can't do. Get aids that are your favorite color, or customize them! My wheelchair is decked out in patches and studs, the color scheme matches my leather jacket, and I love it! You're not alone, you're not a freak, your experiences are real and valid, and there's no shame in telling someone you can't do something, or modifying a task so you can do it safely. Don't let anyone gaslight you. Don't destroy yourself for people or places which refuse to accommodate your needs. You deserve to be heard and taken seriously.
To anyone who loves someone with a disability: Please listen to us. Take us seriously when we tell you our limits. Learn about our disabilities and how they affect our lives. Learn what you can do to help, it may be little things like keeping ice packs or epsom salts on hand. We don't need unsolicited advice, we need support. Give us patience. Celebrate the positives with us, and hold space for us when we're dealing with the negatives. Strive to understand our conditions and love us with them, not in spite of them. It makes a bigger difference than you may think and we will never, ever take it for granted
Links to Nyx's band website and Instagram
Links to Dragon