EDS is rare and often hard to diagnose and its symptoms look like a lot of other diseases and there are a lot of wrong or misguided ideas out there. Here are a few misconceptions and their realities. 

 

Misconception: All the symptoms are in your head. You’re depressed, so you think you’re sick

 

Reality: You’re depressed because you have chronic physical symptoms

 

• The struggle of living with an “invisible” disease is that the symptoms aren’t always obvious to other people, leading them to believe that EDSers are all faking it.The effects of EDS can be crippling and patients seeking help are often met with skepticism from doctors and family because no apparent cause is found for their symptoms. Many EDSers go undiagnosed for years because their symptoms are brushed off and they are called drug-seekers, hypochondriacs or cyberchondriacs--a newer term meaning that a person spends too much time researching their “symptoms” on the internet. There are certainly those who fit into these categories, but people with real pain and symptoms often go untreated. This especially becomes a problem when symptoms are widespread and the disorder rare—such as in the case of EDS. Doctors are too quick to write everybody off as a cyberchondriac or a drug-seeker. The increasing paranoia about drug-seeking behavior has also led doctors to be overly skeptical about the complaint of pain (especially chronic pain) as drug-seeking behavior. EDS often causes widespread, chronic pain that, over time, becomes resistant to painkillers, reducing the effectiveness of over-the-counter medication and even prescription drugs.

• The combined pressures of having an undiagnosed disorder and being disregarded by doctors are coupled with financial burden and emotional pain. Many people with EDS get to a point where they can’t work anymore, or can’t work in the jobs that would give them the health insurance to pay for the costly medical tests and treatments. Financial insecurity has been linked to depression in several studies. There are many factors in the emotional pain that EDS patients feel. It is shown that chronic pain drastically increases the likelihood of clinical depression. According to Robert D. Kerns, Ph. D, National Program Director for Pain Management for the Veterans Health Administration, nearly 50% of people with chronic pain and/or chronic illness develop depression.  But probably the largest cause of emotional pain and depression is rejection of the patients’ claims about pain and fatigue by their own family. The family members are often more willing to believe the doctor’s statement of hypochondria rather than the patient’s legitimate disorder. Thus, patients feel socially isolated and can become depressed and frustrated. Some complain that the ordeal of having to explain the symptoms to friends and family can be almost as bad as the disorder itself.

• Kerns suggests that doctors should work to address the psychological symptoms of a chronic disorder as much as they work to address the physical ones. Beverly Thorn, Ph.D, Clinical Health Psychology Professor and Chair at the University of Alabama, made the comment that “Experts used to think that the amount of pain a person felt was equal to the amount of damage in their body. Today, however, we know that our thoughts and emotions can influence the perception of pain.”

 

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Misconception: There is nothing you can do about EDS

 

Reality: Education and preventative measures can go a long way

 

• Many believe that since there are no treatments or cures for EDS, there is nothing you can do. That’s a myth. There are supportive treatments that can lessen the severity of some of the symptoms. Physical therapy is a common prescription for EDS patients with marked hypermobility in their joints which can make it hard to carry out certain tasks. Supportive bracing can also help with joint instability in combination with physical therapy or gentle exercise, such as swimming. While, contact sports such as football or wrestling are generally contraindicated for those with joint problems, other sports, if they can be done safely and without pain, can actually help ease the symptoms by strengthening the muscles around loose joints and the muscles can help do what the ligaments can’t: hold the joints together.

• Likely the best thing a person with EDS can do is learn about their syndrome. Getting good information about their disorder is the first step to being able to manage it. Shy away from sites like WebMD and go towards medical journals published on sites such as the National Institute of Health (NIH) and the NCBI. Learning basic researching methods to sort through the Google search results are key.http://guides.library.cornell.edu/sevensteps can help you learn how to research effectively on your own, but this site is here to help you find quality information without the hours of searching that may or may not get you the information you need. Visit the Additional Resources page to find a collection of sources that are informational and reliable. 

 

 

Misconception: You have EDS so you can't do anything

 

Reality: You have EDS so you have to be careful, but don't let it stop you from living life.

 

• EDS can be a hard syndrome to deal with. Patients often complain that they can't live their life. And it can be hard. Keeping up with the demands of a "normal" life is stressful on anyone, even more so when the demands are coupled with the struggles of living with a chronic syndrome. If you believe what people tell you, that you can't do anything, then that's what you'll do--nothing. Instead, do what you can to try and stay involved in your favorite activities, scale them down if necessary. if you really can't do the activities you used to, take up something new that you CAN do. EDS is not a contraindication for sports participation or even life participation. Just be careful and listen to your body.

 

 

Misconception: EDS is really rare

 

Reality: While EDS is on the rare disorders list, it is much more common that most people think.

 

• EDS affects an estimated 1 in 5,000 people. That's about .02% of the general population. But just because this number looks tiny, doesn't mean it really is. The incidence rate (how frequently a disorder occurs in the population) of EDS is estimated, meaning that there is wiggle room in that number. Many cases of EDS are very mild, and people may have the syndrome without knowing it. Because of this, the incidence rate is thought to be higher than the 1 in 5,000 that is currently listed. 

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Misconception: Everyone with EDS is extremely bendy and fragile

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Reality: EDS is classically identified and portrayed by the hypermobilty of joints, but that's not always true

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• Media portrayals of EDS are classically stories of people such as Gary "stretch" Turner (also known as Elastic Man) who can stretch their skin and contort their bodies to nauseating extremes. While many with EDS show these characteristics, most of them don't exhibit symptoms to the degree of these portrayals. Since these are the images classically shown describing EDS, most people assume than all those affected are just as "freaky" as what they have seen. In fact, many people with EDS have LESS extensible skin and STIFFER joints than the general public. 

• Other, particularly more recent, publicaly published articles are about people whose joints "pop apart" at the slightest touch, giving readers the idea that people with EDS have joints that pop apart like the arm of a Barbie doll might. Certainly this happens, and a lot of people with EDS have their particular "problem joints" that need constant stabilization to hold them together. But there is also a large population of those with EDS who live perfectly normal lives, even those that are endurance athletes, without falling apart. In fact, it's even suspected that the incidence rate of EDS is much higher than is reported because some people's symptoms are so mild or cause so little problems that they are never diagnosed.