Adira Bennett

@adirabennett | contributor
NOV 13 2019 UPDATE: I am fundraising for a service dog! See link: Adira Bennett (pseudonym of E.K.) lives with Ehlers-Danlos syndrome, postural-orthostatic tachycardia syndrome, mast cell activation syndrome, endometriosis, interstitial cystitis, and complex post-traumatic stress disorder. She loves peaches, dogs, and books, and she is working toward her bachelor's degree in criminology. She believes in you.
Paige Wyant

16 Signs You Grew Up With Ehlers-Danlos Syndrome

Our most helpful EDS articles, delivered straight to your inbox. Subscribe to our Zebra Zone newsletter. Article updated June 14, 2022. Although Ehlers-Danlos syndrome (EDS) is a condition you are born with, it may take many years (or decades) before you are diagnosed. During childhood, it might just seem like you’re more flexible or prone to sprains and injuries than the other kids. Doctors might assume your discomfort is just a result of “growing pains.” It may take the progression of several of your symptoms before doctors are able to recognize you have EDS. “EDS, I would describe it as a genetic disorder of connective tissue,” Paldeep Atwal, MD, a board-certified geneticist, told The Mighty. “It’s when the strength and the structural framework of that connective tissue isn’t as it should be, that’s what’s causing EDS and other connective tissue disorders.” There are 13 subtypes of Ehlers-Danlos syndrome, though the hypermobile subtype is the most common. Your symptoms will depend on your subtype, but most people with EDS experience overly flexible joints, regular partial or full joint dislocations while doing everyday activities, stretchy or fragile skin, easy bruising and chronic pain. Because it’s a complicated condition that overlaps with many other chronic illnesses, it’s not uncommon if it takes more than 10 years to get an EDS diagnosis. After your diagnosis, you might look back and realize that many of your childhood “quirks” were actually early signs of the illness. We asked our Mighty community to share signs that they grew up with Ehlers-Danlos syndrome, which they can now recognize in retrospect. Perhaps some of these will sound familiar to you, too. Here’s what the community shared with us: 1. Having Extra Flexibility If you were the kid who could always ace that flexibility test during gym class, it may have been one of the early indicators you have EDS. Being more flexible than average — sometimes way more flexible — is one of the most common symptoms of the condition. “People tend to be hypermobile. It’s really a hallmark feature,” Dr. Atwal said. “I was always extremely flexible as a child, even more so than other children my age. At the time it was a benefit because I was into gymnastics, ballet and cheerleading. Not knowing that all the flexibility was a bad thing [and] would later cause me so many problems.” — Grace S. “I was always flexible but it wasn’t recognized as medically significant until later in life. My first adverse symptoms looking back were that I had GI issues from infancy.” — Erin M. J. “When sitting twisted up like a pretzel with your feet behind your head playing video games was a totally normal thing for a Saturday afternoon… and you had no idea that wasn’t ‘normal.’” — Laura M. 2. Thinking You Were Double-Jointed Connective tissue helps hold all your joints in place. Because EDS can impact the quality and amount of connective tissue in your body, many people with EDS are prone to full or partial joint locations. In the case of seeming double-jointed, you’re likely experiencing subluxation, or partial joint dislocations, which are often painful. “I can sublux both shoulders without conscious thought. As well as other joints that snap, crackle and pop. I just thought I was double-jointed.” — Jacqulyn S. 3. Experiencing Regular Joint Dislocations In addition to partial joint dislocations, EDS can also make you prone to full joint dislocations. Many people experience joint dislocations, such as in their elbows, shoulders or jaw, while doing everyday tasks like trying to pick up a shopping basket at the grocery store. Joint dislocations occur due to differences in the connective tissues around your joints. “Dislocating something and not realizing that’s what you were doing.” — Emily M. “My elbow kept dislocating. I also had many soft tissue injuries as a kid. It wasn’t until I really injured myself and it wouldn’t heal [that] my doctors finally put it together.” — Christa R. “My sister and I weren’t allowed to hold hands when we were younger because we would dislocate each others’ arms. Turns out we both have EDS.” — Jane B. “I once dislocated my jaw while eating a bowl of cereal. I avoided that cereal for years, because I honestly believed it was the cereal’s fault.” — Melanie G. 4. Always Wearing Support Braces When your joints are prone to popping in and out without warning or you experience pain and weakness, it’s only natural you might try braces or splints to keep those joints in place. Of course when you’re a young child, you may be one of the only kids who needed extra support to play on the playground safely. “All of my teachers thought I was a hypochondriac because I was always wearing wrist or knee braces and going to the nurse with a headache or to get ibuprofen.” — Kelly S. “Having more splints and braces than clothes.” — Julia S. 5. Bruising Easily Collagen — the connective protein impacted by EDS-related gene mutations — largely determines the texture and elasticity of your skin. Many people with Ehlers-Danlos syndrome have fragile skin that’s prone to bruising easily and your wounds may heal slowly. Sometimes you won’t even recognize what caused the bruise. “Waking up with my thumb swollen and bruised. It wasn’t until getting my EDS diagnosis and having my thumb dislocate during the day that I realized why it happened.” — Anastasia G. 6. Holding Pencils Differently When you have EDS, your joints may work differently than your typical peers. As a result, you might need to adapt activities for your body. Take holding a pencil, for example. If you’re prone to dislocations and experience chronic pain in your hands, it can be painful to learn the same grip as your classmates in grade school. “I couldn’t hold a pencil correctly. I was told I had poor fine motor skills in second grade and was forced to correct it. Twenty years later I was diagnosed and learned it’s common for EDSers to use a modified grip. I still revert to my old grip sometimes.” — Jennie B. 7. Needing Extra Time to Avoid Injuries If EDS causes symptoms like painful joint dislocations, you may need extra time to complete everyday activities your peers could do with ease. Whether it’s putting away your backpack more slowly than your friends or walking slowly to the lunchroom, you may have found yourself needing to do things differently to avoid dislocations or pain. “Taking more time than others to do things and taking the extra time to learn how to do things without injury because of so much pain growing up [and] not knowing what it was from.” — Rachel L. 8. Being Told You Have ‘Growing Pains’ It’s not uncommon for kids with chronic pain to have their symptoms dismissed as “growing pains.” When you live with a chronic illness like EDS, however, that pain is real and not “just” a side effect of growing up. “The main problem people have is joint pain. That’s really the biggest issue,” Atwal said. “Constantly being diagnosed with ‘growing pains.’” — Kalee E. 9. Hearing ‘Jokes’ About Your Symptoms At one time, your ability to do a contortionist “trick” may have been easy to write off as a “joke” or something to laugh about. In reality, though, flexibility or joint popping was an EDS symptom. It’s partly why some people have such difficulty getting an EDS diagnosis — it can take time to put together that your symptoms are really Ehlers-Danlos. “I was always spraining my ankles. I was always able to freak people out with the way my body contorted, and I thought it was so funny. I wish it was as funny now as it was then.” — Cara S. “My parents used to joke that they could fold me up and put me in a suitcase. I was always underweight, had frequent nausea and low appetite. I was easily fatigued, and my fingers would hurt when folding laundry.” — Caroline M. 10. Getting Teased for Being ‘Clumsy’ Ending up with a string of injuries, especially just participating in typical kid activities like running around the playground, may have landed you a reputation for clumsiness as a child. In reality, those dislocations or sprains, unexpected bruises, and slow-healing wounds pointed to an EDS diagnosis. “I was labeled a ‘clumsy child’ and teasingly called grace. I always had something sprained, mostly my ankles. I had broken all my fingers several times and dislocated joints daily. Because of all of this I started to carry Ace bandages of varying sizes with me at all times just in case. I still carry three or four when I leave the house and have dozens of different types of braces for all different parts.” — Kaylla S. 11. Adapting Activities to Avoid Pain Ehlers-Danlos can be an invisible illness or disability — people can’t immediately tell that you struggle with symptoms in your day-to-day life like joint dislocations and subluxations or chronic pain. Growing up, you may have found yourself compensating by finding ways to adapt activities so you don’t get hurt. “I go up and down the stairs more or less sideways. It stops my knees hurting so much but I didn’t really notice it until someone pointed out that your knees aren’t supposed to hurt or go backwards.” — Majesta-Doré L. 12. Being More Susceptible to Illness Connective tissue is everywhere in your body, so the differences caused by EDS can lead to a wide array of symptoms beyond just your joints. For example, people diagnosed with EDS may experience gastrointestinal issues, migraine, postural orthostatic tachycardia syndrome (POTS), chronic pain, fatigue and vision issues, among many others. “I constantly had GI issues and a weakened immune system, and I was getting injured so often. I always thought I was just clumsy and more susceptible to illness, until I got my EDS diagnosis.” — Hannah H. 13. Experiencing Chronic Pain at a Young Age People often face the stereotype that chronic pain or chronic illness only affects older people — think the dreaded phrase, “You’re too young to be sick.” If you were questioned for showing up at the doctor’s office with pain typically associated with adults seven decades older than you, it may have been a sign of EDS. “[I remember] my mother taking me to the doctor at 8 for neck and back pain issues. I remember her saying, ‘What 8-year-old has neck and back pain?’ I felt old.” — Lisa P. 14. Running With a Different Gait Running in gym class is a hallmark of school, like it or not. It’s a high-impact exercise that requires several joints, from your hips down to your ankles. You or others may have noticed your running gait is different than other kids because of how EDS affects your joints. “[A] P.E. teacher mocked the way I ran when he forced me to do cross-country training. Turns out I ran like that because my hips/knees hyper-extend.” 15. Wearing Particular Clothing EDS can cause chronic pain and you may find your skin is fragile or sensitive. Like other kids with invisible illnesses, disabilities or sensory sensitivities, you might have been picky about the clothing you wear, reaching for only the softest, most comfortable items to avoid pain and discomfort. “Constant tiredness, ‘growing pains,’ bruising and splitting the skin on my knees all the time, only wanting to wear ‘comfy’ clothes (the softest materials I could find) and being born with severe bilateral hip dysplasia.” — Emily R. 16. Comparing Your Joints to Other Kids You may have reached a point where you noticed you (and your limbs) seemed to work a little differently than your friends. The natural thing kids do is compare. Can other kids bend their fingers all the way back? Do my classmates also dislocate their shoulder every time they pick up their book bag? If you had EDS but didn’t know it, you might relate. “When you have to ask other kids how your knees and elbows are supposed to bend.” — Katie F. If you live with Ehlers-Danlos syndrome, know you’re not alone. While the condition doesn’t have a cure, with the right treatments and support, you can manage many of your symptoms, whether that’s through braces and exercise programs or medications and diet changes. And you can connect with a community that cares on The Mighty by posting on the site using the hashtag #EhlersDanlosSyndrome or #EDS.

Community Voices

3 Things I Wish People Understood About my Anorexia

1) I didn’t develop anorexia so I could look like the models in magazines.

While the media’s portrayal of ultra-thin bodies is certainly a factor in many people’s #EatingDisorders, it’s almost never the whole story. I developed my eating disorder to cope with #Depression and trauma. Others develop their eating disorders secondary to obsessive-compulsive disorder, #BipolarDisorder, #Anxiety, or gender identity issues. My eating disorder was a way to cope with preexisting problems. I never cared much about looking like a supermodel.

2) I didn’t choose to become anorexic.

I never wanted to get sick. I developed anorexia in much the same way that people develop #Cancer: I realized I was having symptoms, I received a diagnosis, and I fought like hell to get better. The grew like some kind of separate entity in my mind with its own voice and its own ideas. My brain changed to accommodate my , and my body withered away. I had to work very hard to heal both my brain and my body.

3) I may be at a healthy weight now, but I still have .

is a mental illness with biological side effects. Even after the biological side effects are managed through weight gain and nutritional rehabilitation, the mental illness typically remains because it takes longer to heal. I am done with my physical recovery, and I am now able to control my eating behaviors, but I still struggle every day with thoughts and feelings that stem from my . Eating disorders come in every body type.

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Community Voices

I didn’t go to school today. My anxiety got the best of me. Am feeling lonely too. Been in bed the whole day. My lecturer called me almost 5 times but I didn’t pick up. if you’re wondering why my lecturer called, I’m the student representative. I hate my anxiety.
I got another exhibition tomorrow but I don’t have anyone who might be wholeheartedly willing to take me. I got a lot of canvases to carry. it’s too much for one person. I feel so lonely right now.

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I Had A Manic Episode At Disneyland

Disneyland smells like burnt caramel and sweat. There is a tang in the air. If I stick my tongue out, I’ll save four dollars. The California heat is burning a hole through my head. Straight through to the confetti and rolling dice. I’m lucky as an opera singer. I’m manic. My blood is sizzling. I have been awake for so long I have convinced myself I’m still dreaming. Unleash the pink animals. I am aware that something is wrong as I yell at my mother in the ticket line. Still, my words are bugs I have to get off me. It doesn’t matter that they don’t make sense: the park is rigged and I won’t fall for it. A girl wearing plastic Mickey Mouse ears looks at me. I want to rip them off of her blonde head. My mother is tired and we haven’t even gotten our tickets yet. She knows something is wrong but can’t put a finger on it. It’s hard to call it a fever when it looks like blushing. She sighs and tells me it is not her fault I sprained my ankle an hour before. While stopped earlier, I was excited about being in LA for the first time. The “city of angels” while I felt holy. It was almost too perfect. I saw a girl with bleached hair walking up ahead and couldn’t stop myself from staring. I didn’t see the pothole I fell into as a result. Now, I could barely walk. We bought our tickets and my brothers led us to the first ride they saw. Something about going so fast, you don’t even have a name. I went on a couple of rides. Span with the machines. Swayed in my seat. Clenched my teeth and felt watched. While my brothers went on Space Mountain, a ride I felt evil radiating from, I stayed on the ground and sought out somebody to talk to. When I’m manic, I feel connected to everybody all the time. Nobody is ever dangerous. It seems people treat me different, too. Like they feel my energy and can’t help but be attracted to it. Men call me baby. Women look me up and down. I’m the virus you thought you wanted gone but you’re so glad to see me. I walked around a bit, singing some fizzy pop song I heard on the radio earlier that day. Slurring syllables. I decided to go to a tiny snack stand, empty save for a dull-eyed employee with wet brown hair. He could use some of my charm, I decided. I’m always deciding. I introduce myself and ask him if he likes working at the “happiest place on earth” and before he can say anything, I tell him that Mickey Mouse controls the world. He’s everywhere. He’s pulling all the strings with his gloves. The man laughs, unsure what to say. I tell him I sprained my ankle and he asks if I’m OK. I know he wants to love me. I say goodbye and find someone else. I sit next to a woman on a bench. I ask for the time and we talk for a while. She’s from Flagstaff. Flagstaff is on fire right now. She hates roller coasters. I tell her my name is Neon, I’m from Texas and I love her earrings. She doesn’t have to know I’m telling a lie. When her family gets off the ride, she introduces me. I make her boyfriend laugh. He loves me, too. They want to take me with them back to Flagstaff. Maybe I could stop the flames. For a couple of hours after that, I twitch and sing. My ankle is bursting through my sock. Everybody knows what I’m thinking. I steal a glittering crystal out of impulse. It might help me. I pick at the food my mother buys me. Finally, she gets me a wheelchair for the rest of the day. Denial is inherited. My brothers wheel me around. I am presidential. I’m splitting up families like the red sea. While they go on a ride, I wait and as I am about to wheel myself over to a photographer to ease my racing thoughts for a while, they come back. The world is funny like that, always saving me from myself. The sun starts to disappear. I’m restless in my chair. I get up and walk around, even though it hurts. As the sky purples, we wait for the fireworks. When they start, I don’t expect to cry but end up doing so anyway. I haven’t cried in a month, but mania makes everything mean so much. Every pink is red, every whisper is a scream. Everything wants to be something. When they’re over, we return the wheelchair and I limp behind my family back to the bus that will take us back to the parking lot. The air still smells sweet. That night, I briefly dream about Mickey Mouse and his empire. Except he doesn’t have a tail. And he keeps laughing. When I wake up, I’m glad to have survived myself.

Brenna Dillard

Why Forced Positive Thinking Is a Problem for Mental Health

A 14-year-old girl lives with severe chronic illnesses which leave her isolated and homebound. She travels states away to hopefully learn new coping skills that will allow her to be out in the world she so desperately wants to explore. Positive thinking was the main method taught to the teens during this weekend. “If you don’t think, talk or ask about illness, then your brain will not acknowledge the pain.” We were told not to talk about how we were feeling, and parents were told not to ask. Months after this program, my depression worsened, and suicidal thoughts began to creep their way in. Years later, I joined Instagram with a page dedicated to my chronic illness with the intent on advocating for myself and others. I soon noticed a toxic trait that plagues my community, taught to me years before: forced positivity. Forced positivity is the idea that people dealing with an illness need to constantly portray themselves in a positive mood or light, and that thinking “on the bright side” will help with pain. This is extremely common on social media where people are expected to only show the good side of their lives. This idea — never allowing people in on letting people know how our bodies feel — becomes problematic in more ways than one. It warps the view of disabled people for society, it contributes to the worsening of mental health for the disabled, and it creates a toxic environment on social media. You cannot truly create an accessible space without seeing and understanding the problems someone with a disability goes through. By teaching people not to express these problems, it continues to make it hard for people with disabilities to participate in life. Advocating online becomes difficult when people within the community attack each other over being open and honest. “Illness fakers” and “munchies” are terms often used to describe someone who fakes an illness for attention, but are they truly faking, or are they simply going against the norm and posting the highs and lows of chronic illness? Cyberbullying is common, and teaching people that bottling up illness-related problems to lessen the pain often leads to worsening of mental illness or even suicide attempts. Physical illness and mental illness go hand-in-hand; it is almost expected to have both. Teachings like these are dangerous, even life-threatening. Breaking this taboo around toxic forced positivity is something I owe to my 14-year-old self and everyone else who went through a similar program. It is for the safety of my friends who have been dealt an unfair hand, and for the forward progress of an accessible society.

Community Voices

3 Things I Wish People Understood About my Anorexia

1) I didn’t develop anorexia so I could look like the models in magazines.

While the media’s portrayal of ultra-thin bodies is certainly a factor in many people’s #EatingDisorders, it’s almost never the whole story. I developed my eating disorder to cope with #Depression and trauma. Others develop their eating disorders secondary to obsessive-compulsive disorder, #BipolarDisorder, #Anxiety, or gender identity issues. My eating disorder was a way to cope with preexisting problems. I never cared much about looking like a supermodel.

2) I didn’t choose to become anorexic.

I never wanted to get sick. I developed anorexia in much the same way that people develop #Cancer: I realized I was having symptoms, I received a diagnosis, and I fought like hell to get better. The grew like some kind of separate entity in my mind with its own voice and its own ideas. My brain changed to accommodate my , and my body withered away. I had to work very hard to heal both my brain and my body.

3) I may be at a healthy weight now, but I still have .

is a mental illness with biological side effects. Even after the biological side effects are managed through weight gain and nutritional rehabilitation, the mental illness typically remains because it takes longer to heal. I am done with my physical recovery, and I am now able to control my eating behaviors, but I still struggle every day with thoughts and feelings that stem from my . Eating disorders come in every body type.

2 people are talking about this
Adira Bennett

Answering 'How Are You?' as a Person With Chronic Illness

“How are you?” We hear this question every day, often multiple times a day, from all kinds of people. For people like me who are dealing with multiple chronic illnesses, it can be a surprisingly tricky question to answer. When you are first diagnosed with a chronic illness, it can be challenging to figure out who to tell and who not to tell. Part of you may want to tell everyone because it is all you can think about and you are craving emotional support. The cashier smiles and offers a quick “How are you?” and you want to blurt out, “Actually, I’m kind of going through a lot; I was just diagnosed with a rare disease called Ehlers-Danlos syndrome. And I also have this thing with my heart called postural orthostatic tachycardia ayndrome… don’t even get me started on the mast cell activation syndrome.” But that wouldn’t be socially appropriate, so you hold it in. Other situations are much more nuanced. For example, a friend from work texts “how r u?” and suddenly you’re examining the relationship with a microscope. How long have you known each other? Does she seem like someone you’d like to confide in? Is your friendship ready to go to that level, or should you wait? Should you offer a little bit of information and see how she reacts? Should you say you’re fine and leave it at that even though you just got out of the hospital, you have two dislocated ribs and your health insurance company is giving you hell? You can do your best to judge each situation, but there will always be mistakes. Every chronic illness fighter has experienced the piercing awkwardness of sharing too much with the wrong person or at the wrong time where your pal is like, “Oh… uh… feel better soon. I gotta go.” We may forget that our “normal” can sound alarming to other people — ER visits and hospitalizations, doctor appointments every week, unrelenting symptoms of all sorts, numerous medications, blood draw bruises of various shades on our arms, canes and IV lines and feeding tubes and EpiPens. We can sound like “Grey’s Anatomy” with all our casual medical jargon. Meanwhile your college roommate goes to the doctor once a year, hasn’t thrown up since that bad shrimp he ate two years ago and doesn’t even own a pill box. This is why having a chronic illness can be so lonely. The healthy people around you often struggle to imagine what your life is like, and they simply don’t know how to be supportive. Many of them get uncomfortable. They change the subject. They drift away when we need them more than ever. Figuring out who you can lean on takes time and requires trial and error. When in doubt, remember you can always turn to communities like The Mighty where your fellow chronic illness peeps are able to understand and support you.

Adira Bennett

Answering 'How Are You?' as a Person With Chronic Illness

“How are you?” We hear this question every day, often multiple times a day, from all kinds of people. For people like me who are dealing with multiple chronic illnesses, it can be a surprisingly tricky question to answer. When you are first diagnosed with a chronic illness, it can be challenging to figure out who to tell and who not to tell. Part of you may want to tell everyone because it is all you can think about and you are craving emotional support. The cashier smiles and offers a quick “How are you?” and you want to blurt out, “Actually, I’m kind of going through a lot; I was just diagnosed with a rare disease called Ehlers-Danlos syndrome. And I also have this thing with my heart called postural orthostatic tachycardia ayndrome… don’t even get me started on the mast cell activation syndrome.” But that wouldn’t be socially appropriate, so you hold it in. Other situations are much more nuanced. For example, a friend from work texts “how r u?” and suddenly you’re examining the relationship with a microscope. How long have you known each other? Does she seem like someone you’d like to confide in? Is your friendship ready to go to that level, or should you wait? Should you offer a little bit of information and see how she reacts? Should you say you’re fine and leave it at that even though you just got out of the hospital, you have two dislocated ribs and your health insurance company is giving you hell? You can do your best to judge each situation, but there will always be mistakes. Every chronic illness fighter has experienced the piercing awkwardness of sharing too much with the wrong person or at the wrong time where your pal is like, “Oh… uh… feel better soon. I gotta go.” We may forget that our “normal” can sound alarming to other people — ER visits and hospitalizations, doctor appointments every week, unrelenting symptoms of all sorts, numerous medications, blood draw bruises of various shades on our arms, canes and IV lines and feeding tubes and EpiPens. We can sound like “Grey’s Anatomy” with all our casual medical jargon. Meanwhile your college roommate goes to the doctor once a year, hasn’t thrown up since that bad shrimp he ate two years ago and doesn’t even own a pill box. This is why having a chronic illness can be so lonely. The healthy people around you often struggle to imagine what your life is like, and they simply don’t know how to be supportive. Many of them get uncomfortable. They change the subject. They drift away when we need them more than ever. Figuring out who you can lean on takes time and requires trial and error. When in doubt, remember you can always turn to communities like The Mighty where your fellow chronic illness peeps are able to understand and support you.