The Struggle of a Diagnosis: The fight to get diagnosed for those who have Hypermobile Ehlers-Danlos Syndrome and Chronic Pain

Amy Andera

ART 200: Art and Community (SYS)

September 9, 2026 

Ehlers-Danlos syndrome also known as EDS is a hereditary connective tissue disorder that is commonly overlooked by medical professionals. There are 13 different types of this disorder but the most common type is hypermobile EDS with around 1 in 5,000 people having it(1). Individuals with this type of the disorder may experience joint hypermobility, frequent joint subluxations or dislocations, chronic pain, and chronic fatigue among many other symptoms(2). Although it is the most common type of EDS it’s challenging for it to get diagnosed due to it affecting essentially every system in the body. Many doctors are under-educated about the disorder or do not believe in it. The process of getting diagnosed is a long and tiring journey. It can take an average of 14 years to get an official diagnosis but ranges from 1 to 29 years(3). This negatively affects not only the relationship the patients have with health professionals but also their mental health. 

Chronic pain is often ignored or dismissed due to there not being a clear way to test for it. Hypermobile EDS is the only type of EDS without a genetic marker. The diagnosis process mainly relies on patient self reports of their pain(4). Being diagnosed relies on the doctor believing a patient's words and the severity of their experiences. Another factor is that 80% of people who have been diagnosed with hEDS are female(3). Historically it has been shown that doctors are more likely to not believe someone's pain based on if they are female. This can lead to a patient having a very toxic relationship with healthcare in general with patients not trusting the healthcare system at all and providers holding animosity to these patients for the amount of attention that they need(3).

This has been an ongoing problem since EDS was defined and chronic pain suffers in general. EDS has now gotten more spotlight on social media as well as some celebrities speaking out about their own experiences with it. More research is currently being done on hEDS and more healthcare providers are being educated on it. The Ehlers-Danlos Society has created a page to educate people on EDS as well as giving people avenues to connect with others who have gone through the same journey of trying to get a diagnosis or just to know someone else with the disorder. Mayo Clinic has also created a blog specifically to provide updated research on all things related to EDS.

I chose this topic because of my own personal experience of trying to get diagnosed with hypermobile EDS. Ehlers-Danlos Syndrome runs in my family with both my mother and my sister being diagnosed with it. I have watched my sister's long journey of trying to get diagnosed, never thinking that I may have it until realizing that it wasn't normal to be in some type of pain all the time. I had brought up complaints with my doctors only to be told that I was dramatic or that it was “growing pains.” During my own journey of getting a diagnosis I have seen many different doctors many who dismissed my pain for being something completely different. I have been told that it was just my anxiety, my period or told that I'm just dramatic. I've realized that many do not know how challenging it is to get a diagnosis for EDS or how doctors often dismiss patients' chronic pain. 

The bones on my quilt represent just one of the types of connective tissue. With the hip bone being disconnected from the pelvis to symbolize a hip subluxation or dislocation. This choice was made because that is one of the joints I myself struggle with a lot. They are made out of quilt batting which is normally on the inside of a quilt which I used on the outside to show how the pain is normally never visible. 

The lace is used to conceal the pain underneath it. This is meant to show how people who deal with chronic pain will hide it either to not get backlash from those who do not understand it or from constant concern from others. 

The words that go along the edge include the phrases of “Help, Not Normal, Please Listen, Too much, and It hurts.” They are the inner thoughts or cry for help from someone who experiences chronic pain. These were placed under the lace to show how they are normally hidden or not listened to by healthcare professionals. They're desperate words calling out for something to change and yet they get dismissed and eventually people are not comfortable saying them anymore.

The larger embroidered words are things that doctors have told people who seek help. They are words that almost all people I've met that have been seeking an EDS diagnosis have heard. Hearing these words constantly causes people to doubt their own experiences and can impact a person's mental health severely when hearing them over and over. These phrases sit on top or in the gaps of the lace since they are the main things heard. It is what the doctors believe and that is usually the end all be all. 

Bibliography

1. “What is EDS.” The Ehlers-Danlos Society, 2026. https://www.ehlers-danlos.com/what-is-eds/ 

Halverson, Colin, & Ellen Clayton, & Abigail Sierra, and Clair Francomano. “Patients with Ehlers–Danlos syndrome on the diagnostic odyssey: Rethinking complexity and difficulty as a hero's journey.” American Journal of Medical Genetics, 187(4) (2021):416-424. https://doi.org/10.1002/ajmg.c.31935 

2. “Ehler-Danlos syndrome: A common but overlooked cause of chronic pain.” Mayo Clinic, December 8, 2022. https://mcpress.mayoclinic.org/living-well/ehlers-danlos-syndrome-a-common-but-overlooked-cause-of-chronic-pain/ 

4. Gazit, Yael & Gris Jacob, and Rodney Grahame. “Ehlers–Danlos Syndrome-Hypermobility Type: A Much Neglected Multisystemic Disorder.” Rambam Maimonides medical journal, 7(4) (2026).  10.5041/RMMJ.10261 

Murrary, Brittney & Beverly Yashar & Wendy Uhlmann, & Daniel Claww, and Elizabeth Petty. “Ehlers–Danlos syndrome, hypermobility type: A characterization of the patients' lived experience.” American Journal of Medical Genetics, 161(12) (2013):2981-2988. https://doi.org/10.1002/ajmg.a.36293 

Tinkle, Brad, & Marco Castori, & Britta Berlund, & Helen Cohen, & Rodney Grahme, and Hanadi Kazkaz. “Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history.” American Journal of Medical Genetics, 175(1) (2017): 48-69.  https://doi.org/10.1002/ajmg.c.31538