01/13/2026
A bit of work I did in school thinking about the interview as a tool for approaching Ehlers Danlos and complex illness issues.
A Self-Interview
What is Ehlers Danlos-Syndrome,
and why could it matter?
SOCS-2025-04-07
Instructors : unamed
1. Who am I and why am I doing this interview about Ehlers Danlos Syndrome? I am a
someone that has a genetic condition effecting my connective tissue, which effects my life profoundly. And I want to spread awareness about it, in the hopes it helps even just one person benefit from hearing a little about my experience with it. Approximately one in 5000 were thought to have the most common type III, now referred to as hEDS
2. Why do I care about the subject? If I could prevent some of the hardship I went
through, from not knowing I had EDS, it’s worth it to me to talk about it with others so they don’t have to learn the hard way. If parents and Drs are aware of the signs and symptoms early, they are more likely to intervene, instead of assuming its growing pains. Or punish their kids for thinking they made the pain up to get out of school.
3. Question: When was the first time I was aware something wasn’t right in my body?
One time I had a strong pulling in my knee socket, like someone was trying to bend my leg outwards like a doll. I had to push it back into place, I believe this was the first time a joint partially dislocated.
4. Question: When was the first time I told someone, I was in pain? I was about seven when I told my mother. I said it felt like my neck was squeaking, it’s difficult to describe, kind of like a rusty gate when I turned my head, except it’s the vertebra of the neck, it was chronic by then. It’s important to listen to what kids are saying, they don’t always
have adult vocabulary to explain how serious something is.
5. What does chronic mean? The first meaning from the Merriam-Webster Dictionary2
means it doesn’t go away. That’s true, I never know how I will be feeling in a few days
or weeks.
Chronic 1. a: continuing or occurring again and again for a long time
chronic pain
chronic illness
6. Question: When did you understand your body was different? I was in a big yoga classroom before the start, and I realized I was the most flexible person in the studio, the entire studio. Some teachers had moved me to advanced levels using me as an example,
others were frustrated with me. Ultimately, yoga did little for me because couldn’t build muscle in poses requiring strength, despite hard work, the progress wasn’t happening. It led to days of bed rest between classes. I had to accept no matter how hard I tried yoga
wasn’t going to fix me.
7. Question: How do I cope with a chronic illness? I don’t want to have to rest as much as I do, but I have no choice. I need to take medications to stay functional. It involves arranging appointments, picking up prescriptions etc. I have to accept resting isn’t giving up, giving into exhaustion is necessary to be able to get back up and try again. It’s just
frustrating to not be able to do the things I want.
8. Question: Would I have done anything differently if I had known about Ehlers
Danlos Syndrome sooner?
I don’t know if I could have given up ballet easily, but if teachers, coaches, parents in sports professions were aware of EDS, they could adjust some activities for kids to help them avoid injuries, it wouldn’t be that difficult, there are a list of resources at the Ehlers Danlos Society website3that can help.
9. Question: What was it like when I finally found out I had EDS? I remember clutching the long rolled up list of symptoms for Ehlers Danlos Type III, the now outdated term hEDS the geneticist had printed out, I was practically running out of the dimly lit hospital
of green floors and beige walls. I turned a corner into a hall with a stairwell and an
pushed an exit door out into a bright light.
10. Question: Did it help you once you had a diagnosis? It helped a bit to be taken more seriously in following Drs appointments when I needed them to look into co-morbidities.
11. Question: How do I feel now? Sometimes I have days comparable to flu-like symptoms, weeks, I feel like I have a hang over without drinking, sore muscles, it’s just normal.
12. What is the hardest part about having Ehlers Danlos Syndrome? Watching
opportunities pass by and not being able to participate or make plans because of fatigue and knowing I will pay afterwards for any activity I do.
13. Why do I think an Ehlers Danlos Syndrome diagnosis is important? It’s important for a few reasons, one because Vascular EDS vEDS4 is one of the most dangerous subtypes because bleeding is a common complication that needs to be caught before a catastrophic event.
I initially intended to analyze the medical interview, which lead to creating an interview of my experience of Ehlers Danlos Syndrome (EDS) as a patient. I wanted to do it in a way that would
help understanding of the condition through interview questions, in a non-fictional perspective with antidotes, but not too heavy with detail or sadness. Due to misconceptions around the over
valuing of flexibility in sports and dance, even fetishization of it, I found it difficult to find Drs knowledgeable about its symptoms and co-morbidities, possibly due to confusion with joint
hypermobility without connective tissue disease symptoms. By the time I figured out I had a what was considered a rare connective tissue disorder, I was
well into adulthood. It took another four years to get a formal diagnosis of Ehlers Danlos type III, from an Academic Clinician, Professor, at UBC Department of Medical Genetics, Faculty of
Medicine. It was a relief to know there was a reason for my symptoms. However, since there is no cure, no effort was made to help me manage the widespread pain.
It can be confusing for Drs and patients to understand the condition, and or too time consuming to keep re-learning new criteria, and many Drs refuse to take on patients with the condition, or
won’t test for it in Vancouver. However, I believe it is to in depth to go through the changes in the 2017 criteria change that identifies the thirteen subtypes, and the changes hoped for in 2026,
all that can be found on The Ehlers Danlos Website listed in the work cited. I don’t see a clear path forward for clear diagnostic criteria in the near future for the most common type, previously
called EDS type III, now referred to as HSD or hEDS, depending on who the diagnosing Dr
was.
Could it be because Ehlers Danlos Syndrome doesn’t have the same romanticized history as consumption or cancer, and is considered rare it has people perplexed? Susan Sontag States beautifully in the opening to her enquiry to Metaphor as Illness, ” My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill
—is one most purified of, most resistant to, metaphoric thinking. Yet it is hardly possible to take up one’s residence in the kingdom of the ill unprejudiced by the lurid metaphors with which it
has been landscaped. It is toward an elucidation of those metaphors, and a liberation from them, that I dedicate this inquiry” (Sontag,1) Sontag’s words are so fitting of chronic illness experience, they could only have come from someone that directly experienced a difficult illness.
I believe unfortunately illness, sickness, and disability alone as words already carry bias, so many words used to describe ailing states, build a story of fear of the unknown. I wonder how we
can liberate ourselves from the tendency to attach stereotypes to conditions or diseases, people are more than meets the eye.
Work Cited
1. The Ehlers Danlos Society hEDS - The Ehlers Danlos Society
2. Webster, Merriam. CHRONIC Definition & Meaning - Merriam-Webster
3. The Ehlers Danlos Society An Educator's and A Parent's Guide to the EDS Child
4. The Ehlers Danlos Society vEDS - The Ehlers Danlos Society
5. The Ehlers Danlos Society What is HSD? - The Ehlers Danlos Society
6. Sontag, Susan. Illness As Metaphor - Susan Sontag.pdf, January 26, 1978, issue
Accessed, 2025-06
2017 EDS International Classification - The Ehlers Danlos Society
