17 Myths About Ehlers-Danlos Syndrome That Make It Even Harder to Live With
The Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders that vary in how they can affect the body and are currently incurable. They can be divided into 13 different subtypes, each involving different signs and symptoms, but EDS is commonly characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal) and tissue fragility.
Although EDS is not considered rare, many people (including doctors) are still unfamiliar with the illness and the reality of how it can affect someone’s life. These uncertainties can unfortunately give way to assumptions that are not just inaccurate, but hurtful. Many may be under the impression that EDS simply means you’re flexible, or have stretchy skin, but the reality is that it’s a systemic condition that can cause a wide range of serious symptoms.
Between the physical symptoms and emotional impact of having a lifelong condition, Ehlers-Danlos syndrome can already be a difficult illness to manage. But add on the stigmas and misconceptions surrounding the condition, and navigating life with EDS can become even tougher.
We wanted to correct some of the misconceptions surrounding EDS, so we asked our Mighty community to share the “myths” they’ve heard that make it even harder to live with the condition. Breaking down these stigmas is not only an important part of promoting general understanding and awareness, but could eventually lead to more research and better treatment options for those with the illness.
Myth #1: EDS isn’t painful.
“‘EDS isn’t painful.’ EDS can be non-painful, mildly painful or excruciatingly painful depending on how it affects you.” – Candace M.V.
“That it doesn’t hurt. It hurts a lot.” – Monica J.
Reality: Many of those with EDS experience chronic pain, though the level and frequency of the pain can vary greatly from one person to the next.
Myth #2: EDS just means you’re “a bit bendy.”
“That EDS is just being stretchy. EDS has so many facets, comorbidities and daily symptoms.” – Candace M.V.
“That it’s not just about being ‘double-jointed’ which isn’t even the correct term. It affects every system of the body.” – Megan M.
“Even doctors I’ve seen think I’ll be totally healed by six half-hour sessions of physiotherapy… because they think that hEDS is just ‘being too bendy.'” – Paige P.
“EDS ‘isn’t that bad, it’s just being really flexible.’ The reality is, EDS is a genetic disorder affecting the collagen in our bodies. Collagen is literally everywhere in our bodies – bones, muscles, tendons, ligaments, veins, arteries and internal organs. It’s so much more than just being flexible. It’s joints that sublux and dislocate. It’s tendons and ligaments that can be severely sprained by sneezing. It’s repeatedly falling down. It’s nights spent weeping because I am just so tired, but can’t sleep due to the pain. It’s watching my husband cry because I’m in so much pain, and he can’t help me. It’s sometimes being scared of the future. Being extra flexible is the least challenging thing about living with hEDS [for me].” – Darcey R.
Reality: Although joint hypermobility is a common symptom amongst those with EDS, the condition can affect nearly any part of the body (since connective tissue is so prevalent), therefore producing a wide range of symptoms. Even if joint hypermobility is a person’s primary symptom, it can give rise to a lot of pain and problems, and involves so much more than being “flexible” or “a bit bendy.”
Myth #3: You’re “just depressed.”
“I’m not just depressed. I’m depressed because I push myself through each and every day to try to function somewhat normally. I’m depressed because every move I make hurts. I’m depressed because I hurt when I’m not even moving. I’m depressed because I can’t throw a ball to my son when he wants to play catch. I’m depressed because I can’t join my family in activities because the pain will be unbearable and cause horrible pain for days after and I’ll be worthless. I’m depressed because I’m scared for my future… I won’t get better, I’ll get worse. I’m depressed because yesterday I had to cancel plans with a friend, again, because I was profoundly fatigued. I’m depressed because my husband is having to deal with the loss of his retirement plans because there’s a real possibility I won’t be able to work anymore. I’m depressed because the cards I was dealt are just plain cruel.” – Jennifer T.G.
Reality: Depression and EDS are very different illnesses that each have a unique set of symptoms. Some people may live with both depression and EDS, but each illness is deserving of recognition and treatment.
Myth #4: You look fine, so you must be feeling better.
“How I look does not set parameters on what kind of, or how badly I can feel pain.” – Brittney B.
“People think, ‘Oh, you can’t be disabled, you don’t even look sick.’ I wish they knew that the only reason they see me at all is because it’s a good day. I wish they could see my hidden braces and dislocated joints. I wish they could feel my pain.” – Emily W.
“That I’m making it up or playing up my symptoms. That it can’t be that bad if I’m smiling.” – Bailey V.
Reality: Illness isn’t always “visible.” A person’s appearance doesn’t necessarily reflect their health or how they feel.
Myth #5: Being “extra flexible” is “fun.”
“Being bendy isn’t fun. The party tricks look cool, but they’re damaging.” – Courtney M.
“‘Being too flexible is a good thing.’ I wish people knew the dangers and pain being ‘too flexible’ causes. Risk of organ rupture and recurrent dislocations are not a good thing!” – Sydney M.
“‘Oh, you’re flexible! That’s so cool! I wish [I was] like you! Your partner must love it!’ It’s not flexibility like a trained dancer, it’s because our collagen isn’t built right. It doesn’t make it more fun in bed for our partners. It’s painful and causes damage to our joints doing normal tasks let alone ‘extracurricular’ activities.” – Amber R.
Reality: There’s a difference between flexibility and hypermobility. While simply being flexible may have some perks, being “extra bendy” due to EDS can actually cause a lot of pain and damage to your body (which is why doctors advise against performing “party tricks”). Experiencing pain, dislocations and subluxations and being limited in your movements and abilities is not what most would consider “fun.”
Myth #6: EDS only affects people with a certain body type.
“A common myth about those diagnosed with hEDS is that we are all tall and thin. Nope, hEDS doesn’t discriminate; it affects all body types.” – Melissa S.P.
Reality: Despite the (inaccurate) stereotype that only tall, thin women have EDS, the condition can affect people of any sex, ethnicity or body type. Those with EDS may already face discrimination or disbelief; this shouldn’t be multiplied because they “don’t look like” the “stereotypical” EDS patient.
Myth #7: The pain is “in your head.”
“Our pain is ‘in our heads.’ I’ve been told this sooooo many times, even without doctors getting to know me. They just look at my medical file and say, ‘You’ve seen so many doctors for this, would you like to try counseling?’ It is the most frustrating/infuriating part of having EDS for me. I want help, but no one is willing to help me because of it.” – Michelle B.D.
Reality: People with EDS are not “making up” or “exaggerating” their pain. Their pain is real and valid and deserves to be treated as such.
Myth #8: EDS only affects the joints.
“The biggest myth about EDS is that it’s only a problem with your joints. Um… collagen is in every part of your body. EDS affects everything.” – Heidi M.J.
Reality: Ehlers-Danlos syndrome affects the connective tissue, which is found throughout the body – not just in the joints. It’s in the skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, etc., which means it has the potential to affect any of these body parts.
Myth #9: Every person with EDS has stretchy skin.
“‘Everyone with EDS has stretchy skin.’ Stretchy skin is mostly associated with classical (and some hypermobile), but it seems most doctors think you can’t have EDS if your skin isn’t crazy stretchy. Most people with EDS have some skin involvement, but it can be anything from velvety to doughy to wrinkly.” – Caroline M.
“I had a doctor tell me that because my skin wasn’t stretchy and I didn’t have big scars everywhere, there was no way I had EDS (suspected to have hEDS).” – Andie G.
Reality: Although skin hyperextensibility is a common symptom of EDS, not everyone experiences this, and those who do are not all affected the same way.
Myth #10: You just need to exercise more.
“‘The more you train, the better you get. Lift weights or something…'” – Susanne C.W.
“Generally, having strong muscles to keep your hypermobile joints in place during movement is great. But, what works for one can cause horrible damage to another’s joints resulting in a worse condition than they started out with. Taking and giving advice can be difficult when it comes to EDS. Listening to your body and being really patient is important. Don’t do exercises that harm your joints or rush it because somebody else says or does so. I did a gym exercise to strengthen my leg muscles but it caused kneecap subluxations. I was stubborn and kept doing it anyway but ended up with daily kneecap subluxations instead… In other words, the exercise to help did the opposite. It is hard though to listen to yourself sometimes when you desperately want to get better.” – Sara S.H.
Reality: Exercise can be extremely tricky for those with EDS due to the potential for injury. Although generally healthy people can experience injuries due to muscle weakness or loss of muscle mass and therefore may benefit from strengthening exercises, this does not mean exercise is the “cure-all” solution for people with EDS. An exercise program should be carefully planned out with your doctor and physiotherapist to find which movements work best for you and your body – but even then, strengthening your muscles will not make your EDS go away.
Myth #11: You’re young, so you can’t be in that much pain.
“I look young and healthy, so there’s ‘no way’ I can truly be in such severe pain. But I am. And I can’t get any help. I get treated like a hypochondriac every time I see a doctor, they have no idea what EDS even is…” – Lacey M.
“Just because I’m young, doesn’t mean I can’t be sick.” – Hana Ć.
Reality: Pain does not discriminate by age. Even young people who look healthy may experience extremely high levels of pain. Dismissing a person’s pain because of their age can be damaging both physically and mentally.
Myth #12: Subluxations and dislocations don’t hurt.
“‘Subluxations and dislocations don’t hurt if you have EDS.’ I know so many people who’ve had doctors say this to them and then deny them pain treatment.” – Jo P.H.
Reality: Many of those with EDS experience frequent subluxations and dislocations, but it doesn’t necessarily mean they “get used to” the pain and discomfort a subluxation or dislocation can bring. Whether it’s your first time or your hundredth time feeling a joint move out of place, it likely hurts just the same. A person’s pain shouldn’t be discounted just because they experience it often.
Myth #13: EDS is “just anxiety.”
“EDS is not anxiety, nor is it caused by anxiety. I was misdiagnosed for years because a doctor told me I was dislocating ribs because I was anxious, and therefore tense, all the time.” – Krystal K.
Reality: EDS and anxiety are very different illnesses. Although some people may struggle with both a chronic illness and anxiety, both illnesses are deserving of recognition and treatment.
Myth #14: If you use a mobility aid one day but not the next, you must be “faking.”
“That we are faking that one day we are walking without aided devices then the next day or few days later we have to use canes, walkers and wheelchairs. I just wish people weren’t so mean and hateful.” – April B.G.
“Sometimes I need the Walmart scooter… sometimes I don’t.” – Staci H.H.
“Just because I can walk or do an activity one day doesn’t mean I can every day.” – Shyla B.
“That because you have it, you cannot function at all like anyone else. Every moment you do things ‘normally’ or are doing well, people think you are magically cured. People don’t seem to understand that there are good days and bad days, and there isn’t a cure. It will never go away.” – Bonnie L.C.
Reality: As with many chronic illnesses, the severity of symptoms can change day to day. A person may require a cane or wheelchair to get around one day, but either not need it or decide not to use it the next. This doesn’t mean they have been “cured,” and it certainly doesn’t mean they’re “faking.” Those with EDS should feel comfortable accommodating their illness in whatever way is (or isn’t) necessary without fearing criticism or judgment.
Myth #15: EDS isn’t real.
“‘It doesn’t exist.’ That’s what numerous people and doctors have told me.” – Madison V.D.
“Even though I’m 19, almost 20, I can hardly walk because my hips and knees always try to dislocate and walking causes me extreme pain. Every time I tell my doctors they say it’s all in my head, I just need more physical therapy, EDS doesn’t cause pain, I’ve even had a doctor say EDS isn’t real.” – Raya D.
Reality: EDS is a legitimate condition with very real symptoms.
Myth #16: You can cure EDS with lifestyle changes.
“‘Oh just do yoga or eat better and you should see some improvement.’ Nope! That won’t fix a collagen mutation.” – Alyssa O.
Reality: Although some may find that certain lifestyle changes help with some of their symptoms, there is no magic “fix” or “cure-all” that is guaranteed to improve one’s condition. EDS is currently incurable, and its presentations and effects vary greatly – so what helps one person with EDS may not help another.
Myth #17: Everyone with EDS experiences the same symptoms.
“That we all fit in one category, with all of the same symptoms. Everyone with EDS is different, all of our bodies present in different ways. Just because my symptoms aren’t what you’re used to, doesn’t mean they are real. No one with EDS fits a mold.” – Marissa L.
Reality: No two people with EDS are affected in the exact same way. Everyone is different, so the ways in which they are affected by this condition will be different too. While there can certainly be benefits to sharing your experiences with others, it is important to avoid comparisons and to not judge another person because they are different.