Ehlers-Danlos Syndrome (EDS): It’s Time To Make the Invisible Visible
By Emily Montague
IMAGE: MANDEM, Florida State University, 2016.
May is EDS and HDS awareness month, and people all over the world are sharing their stories and showing their support for those suffering from these disorders.
Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HDS) are just two examples of what many call “invisible” illnesses. These are disorders or diseases that don’t necessarily present outward symptoms, but impact sufferers’ health and day-to-day lives in nonetheless.
Millions of men and women suffer from invisible illnesses, and their stories often feature more than just physical pain. Living with an invisible illness like EDS or HDS is often a lonely, isolating experience.
We’re hoping to become part of the movement to change that reality for the better––and as always, we’re going to do that by sharing stories, honoring voices, and striving to empower the women and allies behind them.
The Invisible Struggle––What It Means To Have An “Invisible” Illness
When you think of the word “illness” or “disability,” you probably imagine something obvious. You might envision someone who uses a wheelchair or a cane, or somebody with a visible skin condition.
Many debilitating illnesses don’t present any outward symptoms at all. These are often called invisible illnesses, but that label doesn’t make them less severe for the people who have them. These are often chronic and lifelong disorders that someone is either born with or develops over time. They include conditions such as EDS, fibromyalgia, lupus, chronic fatigue syndrome, Crohn's disease, and many more.
As a society, we tend to take an “I’ll believe it when I see it” approach to other people’s struggles. This isn’t always a conscious attitude, but it is pervasive, and it’s harmful to those suffering quietly in our midst. People with invisible illnesses are often dismissed, overlooked, or simply not believed when they talk about their struggles. This is an isolating and painful experience that only adds to the suffering that patients have to deal with.
EDS and HDS can cause constant pain, frequent joint discomfort (including dislocations), muscle deterioration, vascular issues, and much more. In some cases, it can even be fatal.
Chronic pain is a major feature of most invisible illnesses, and that pain takes a toll on sufferers’ bodies and minds. Long-term effects arising from these illnesses can eventually threaten a person’s mobility, mental capacity, and life. They may be able to walk, talk, and outwardly live their lives “normally,” but it comes at a cost. They deserve compassion and assistance from the people around them, the representatives they elect, and the healthcare system at large. Nonetheless, they are often failed by all of these systems.
Many people with EDS or other chronic and invisible illnesses have to see multiple doctors and specialists before being tested for their disorder. They are frequently told that the symptoms they’re experiencing are psychological in origin. They may be prescribed antidepressants or antianxiety pills instead of the medications that will help them in the long term. By the time many patients are formally diagnosed, their condition has gotten so severe that they are hospitalized.
I spoke with Lara Bloom, the president and CEO of the Ehlers-Danlos Society, about the way EDS patients and others with chronic illness are treated by the healthcare system.
“Most people face years––sometimes decades––[of] a diagnostic odyssey waiting for answers. Women, especially, are bounced from doctor to doctor, presenting with a myriad of multisystemic symptoms which are often invisible, which too often leads healthcare providers to [assume there is] a psychological cause rather than a physical one.”
PHOTO: Peter S. Cohl
“Invisible No More: The Faces of EDS/HSD.” The series is an ongoing program run by the Ehlers-Danlos Society
The impact of this doubt and invalidation is profound. Patients are traumatized by their experiences within the healthcare system, and there are few recourses for those who have been harmed by uneducated doctors’ oversight and well-intentioned but poor judgment calls.
“We are witnessing medical PTSD and long term issues from this long and painful journey,” says Bloom. “With EDS and HSD there is no current treatment and cure, but there is management, and there should be validation. Those two things can make a profound difference to a persons quality of life, and every doctor is capable of giving it.”
It’s not only doctors who have a responsibility to listen and validate the experiences of those with EDS and other chronic illnesses. We all need to become more aware of these disorders. By educating yourself, you become an ally and an advocate for loved ones who might be struggling to get a diagnosis.
In addition to the efforts of everyday people, we need the support of well-known voices and the media to step up and remove the stigma surrounding invisible illness. Luckily for us, there are plenty of incredible people who are already doing just that.
A Joint Effort––How Celebrities With EDS And HDS Are Raising Awareness About All Invisible Illnesses
If I told you that Lena Dunham, Sia, and Jameela Jamil have something major in common, you might assume I was talking about their fame. That’s certainly one feature they share…but so is EDS. All three of these celebrities have an Ehlers-Danlos diagnosis and have been open about their experiences with the disorder.
These household names aren’t the only ones. From athletes to artists, more and more celebrities are opening up about EDS and what it means to be diagnosed with this rare disorder.
EDS is an inherited disease that affects the body’s ability to produce collagen. Since collagen is one of the body’s “building blocks,” diseases like EDS present wide-ranging symptoms that can impact everything from joints to heart tissue. Balancing a demanding career––and the fame that comes with celebrity status––is an incredible feat when you have EDS.
This becomes especially clear when you learn that EDS has a high rate of comorbidities. People with this disorder usually have other, concurrent conditions as well. Jameela Jamil, for example, suffers from PCOS as well as EDS. Lena Dunham has fibromyalgia and endometriosis in addition to her Ehlers-Danlos diagnosis.
Athletes like Paralympian Vanessa Wallace and American Ninja Warrior competitor Enedina Stanger are also speaking up about EDS and other invisible disorders. Their actions speak as loudly as their words when it comes to challenging the way we define words like “disability” or “illness.”
“Most people face years–sometimes decades–[of] a diagnostic odyssey waiting for answers. Women, especially, are bounced from doctor to doctor, presenting with a myriad of multisystemic symptoms which are often invisible, which too often leads healthcare providers to [assume there is] a psychological cause rather than a physical one.”
EDS is just one out of hundreds of similar conditions that countless athletes, celebrities, and public figures deal with on a regular basis. Speaking up about these otherwise hidden struggles allows people all over the world to connect and understand what it’s like to live with chronic illness.
That advocacy is the first step toward real change, and it represents a (sometimes literal) lifeline for those who might otherwise remain untreated and isolated due to their invisible illness.
Revealing A Hidden World––Art & Invisible Illness
As conversations about invisible illness become more commonplace, artists all over the globe have begun to share their own experiences through painting, sculpture, photography, and more. Visual art is a way for those with chronic illness to share their perspectives and spark interest in the disorders they live with every day.
IMAGE: MANDEM, Florida State University, 2016.
Hypermobility: Small Works Series — Mixed Media on Clayboard.
Examples abound. Florida State University featured an EDS-themed exhibition by MFA student Maize Arendsee (a member of the artist triad known as MANDEM) in 2016. The exhibit was named “Hypermobility” and featured paintings depicting bodies in contorted positions. The images are attention-grabbing and complex, and the entire exhibition was organized and led by women with EDS. It toured the US, Italy, and the UK.
Another wide-reaching project is the photo series “Invisible No More: The Faces of EDS/HSD.” The series is an ongoing program run by the Ehlers-Danlos Society and features amateur and professional photographs of people with EDS or Hypermobility Syndrome Disorder. The poses are expressive and diverse, with each participant offering their unique take on the project and the experience of living with invisible illnesses like EDS/HSD.
EDS isn’t the only invisible illness being made visible by talented artists. Elizabeth Jameson, for example, is a painter who was diagnosed with Multiple Sclerosis in 1991. She uses her abnormal brain scans to create dynamic, colorful art pieces, many of which are on display at the NIH and multiple Ivy League colleges such as Yale and Harvard.
On a broader level, an artists collective called SICK! has brought together many different artists with chronic, invisible illnesses and disabilities. They challenge stigma and provide a space for these creators to express themselves openly and without shame. Started by Zara Carpenter, the project has helped raise awareness about invisible illnesses and spark conversations between those who have them and those that don’t.
Zara has been outspoken about what it’s like to live with fibromyalgia and other chronic conditions, including the sense of betrayal and isolation patients often feel when seeking medical care.
The visual arts have always been a powerful way for us to explore the human experience. The concept of invisible illness makes the medium even more powerful when it is used to offer perspective on life with these conditions.
Opening Eyes And Redefining The “Invisible” Experience
The concept of invisibility is tied together with the loss of connection, validation, and hope. When a person’s experiences are reduced to the invisible, they begin to feel unseen and unheard.
Those of us who occupy the spotlight are uniquely poised to change that reality and help our communities to open their collective eyes toward invisible illnesses like EDS. For celebrities, the simple act of speaking up on social media or on award stages can make an enormous difference. For artists, the act of expression becomes a tangible way to bring their struggles into the light.
The truth is that pain is never really invisible, and chronic illness is always a tangible thing for those who have them. We need to develop compassion and understanding toward those with EDS and other invisible illnesses. In doing so we allow these quiet warriors the chance to heal and seek treatment on par with the kind offered to everyone else.
It’s time to make the invisible visible. We can start by looking to those who are already doing so. Together, our efforts can bring all of us into a brighter, better world.
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