Share Your Story

Living with Ehlers-Danlos Syndrome and chronic illness can feel invisible. The Kintsugi Chronicles is a volunteer run project that creates space for these stories to be seen, heard, and honored. Through our stories, we are helping friends, family, caregivers and medical professionals learn more about what it's like to live with this complex connective tissue disorder.

We would love to help you share your story! The founder of The Kintsugi Chronicles, Meghan Hill, offers free/accessible virtual photoshoots (no need to leave your house or even your bed) and we have volunteers to help you document your journey in written or audio form.

Why stories?

People with Ehlers Danlos Syndrome regularly face barriers when trying to access medical care. We frequently experience trauma and psychological distress as result of our medical encounters because of how challenging it is for both patients and providers to manage such a complex condition (especially when such little research related to symptom management exists). By sharing our stories, we hope that our friends, family, and medical providers better understand us and the support we need to manage the debilitating symptoms we experience.

"Data can persuade people, but it doesn't inspire them to act; to do that, you need to wrap your vision in a story that fires the imagination and stirs the soul." - Harrison Monarth

Our stories may be complicated and hard to understand...

But that's not because we're making up symptoms.

Have you seen how many things we need to do to manage our symptoms? Most of us have a long list of things we would rather be doing than spending time trying keep our pain, nausea, walking issues, etc. at a tolerable level.

But that doesn't mean we're not worth empathy and understanding.

Whether our stories makes sense to you or not, that doesn't mean we're not worth the same empathy and understanding that you wish for.

But that doesn't mean our issues are functional, psychosomatic, anxiety, etc.

Although many EDS patients do experience central sensitization, most also have other comorbidities causing symptoms. Labelling symptoms as functional does a disservice to patients whose debilitating symptoms are coming from comorbidities that (at least experimental) treatments exist for (ie CCI, AAI, occult tethered cord, vascular compressions, POTS, MCAS, endometriosis, and more).

But that doesn't mean you shouldn't listen to what we're saying.

We know that there is loads of misinformation floating around on the internet about complex chronic illnesses, which is hard for us too. We hope that you're able to tune out the voices who are sensationalizing life with EDS and really listen to our stories.

Read our stories

Learn about what it's really like to live with Ehlers Danlos Syndrome. We hope that our stories lead will help our friends, families, caregivers, and medical providers to understand us better.