Conversational Tools for Discussing the Ehlers-Danlos Syndromes

Basically, EDS For Dummies (or loved ones) - with special guest, Victoria Daylor

Explaining the complexities of a condition like EDS concisely and effectively can be challenging. How many times have you been asked “What is EDS?” by friends, family, co-workers, and even healthcare professionals. It can sometimes feel hard to even know where to start, or which aspects of the condition are most important. We (Cortney and special my guest, Victoria) hope to provide a starter kit on how we often start these conversations in various settings. We’ve put together some suggestions tailored to varying time frames, the other party’s level of interest, and your relationship with them. Note: The following can be useful with those with Ehlers-Danlos syndrome (EDS) and hypermobile spectrum disorders (HSD), but for brevity we use “EDS”. 

The long version: 

Sometimes those around you may deal with chronic illness, be interested in medicine, and just a good listener and are eager to learn more. This can be a great opportunity to not only share about yourself, but also spread awareness about EDS.

The Ehlers-Danlos syndromes (EDS), are a group of genetic disorders that affect connective tissues in the body. Connective tissues are like the glue that holds your body together, providing support and structure to your skin, joints, blood vessels, and other organs. In EDS, there's a problem with the production of collagen or other proteins in the connective tissue. This can result in overly flexible joints (hypermobility) leading to musculoskeletal issues, stretchy skin that can be fragile and bruise easily, and sometimes complications involving the heart, blood vessels, or internal organs, and many co-morbid conditions that impact quality of life. 

There are different types of EDS, each with specific features. Most subtypes are rare diseases and can be diagnosed genetically, but the most common subtype, hypermobile EDS (hEDS), is more prevalent. EDS occurs on a spectrum and may affect each person differently in terms of symptoms and severity. Symptoms are often ‘invisible’ but can also fluctuate throughout one’s lifetime (and sometimes be more ‘visible’).

Explaining EDS to a new friend:

Making new friends when you have a chronic illness can be challenging just putting yourself out there. It can be scary or vulnerable to share this with someone new. Here is one way you can discuss it:

“Just a heads up, I have Ehlers-Danlos Syndrome (EDS), which is a genetic condition making my body's tissues, like joints and skin, not work as well as it should. It can cause some challenges, but I’ve gotten pretty good at living with it. I just want you to know in case something comes up, or I ever seem flaky, it has nothing to do with you, but my illness can be unpredictable sometimes.“

Explaining EDS to a first date:

Should you or shouldn’t you bring up your disability on a first date? Well, that’s up to you, but if you do choose to, this example below could be helpful for sharing it with a potential partner.

“Before we get too far into our conversation, I wanted to mention something about me: I have Ehlers-Danlos Syndrome, or EDS. It's a genetic condition that affects my body's connective tissues, making my joints move beyond a normal range of motion. Sometimes it causes pain and fatigue, so I can’t keep up with everyone else, attend events or participate in athletic activities, but I still can enjoy many other aspects of life. It's a part of my life, but it doesn't stop me from doing things I love. I just thought I'd share that, so you have an understanding, but please feel free to ask if you have any questions!”

Explaining EDS to a co-worker:

Disclosing your health at work can be risky at times. But if you already have workplace accommodations, it doesn’t hurt to have your coworkers in the loop. They might show you a lot of empathy and support, and help out when you are struggling at work. This is one way it could be brought up:

“Hey, I have this condition called Ehlers-Danlos Syndrome (EDS). It's a genetic thing that affects my body's connective tissues, making my joints extra flexible and impacting how a lot of other body systems function. Sometimes it causes pain or makes me more prone to injuries, but I manage it with treatments and lifestyle adjustments. I wanted you to know, in case I ever seem unwell at work, or fluctuate in terms of my disability or needing a mobility aid.”

Explaining EDS to a medical provider:

Sometimes physicians, EMTs, nurses, physical therapists, etc. haven’t heard of EDS before, or haven’t kept up with the evolving understanding of the condition. It can be helpful to approach this conversation with how it affects you specifically and keep it brief unless they ask further questions.

“I have Ehlers-Danlos syndrome, it's a genetic connective tissue disorder. It mostly affects my joints, pain levels, GI system, and spine, which can impact my quality of life when I do chores, want to go out socially, and exercise. It seems to affect my whole body, and I appreciate when my entire healthcare team is aware. I would be happy to discuss it further if you have any follow up questions.”

It may also be helpful to specify how it affects you in the context of their scope of practice. For example, a physical therapist may need to know you are hypermobile or prone to subluxations and dislocations.

Other helpful responses to common questions:

Why are you using a wheelchair today, if you can walk? / Why do you only use a mobility aid sometimes?

“I have a genetic connective tissue disorder that is unpredictable. The severity of my symptoms change daily, and sometimes throughout the day, so I use a wheelchair as needed. There is actually a term, “ambulatory”, for those who use a wheelchair to help get around even though at some points they may be able to walk without support.” 

Why are you having SO much salt?

“Due to EDS and postural orthostatic tachycardia syndrome (POTS), my body has a hard time staying hydrated. This can cause me to feel dizzy and fatigued easily, but eating a ton of salt helps!”

So since it’s a problem with collagen, wouldn’t taking collagen supplements help?

“It sounds like it would, but unfortunately taking collagen wouldn’t help. Since EDS is genetic (in my DNA) my body doesn’t have the proper “instructions” on how to make my own collagen no matter what I eat.”

I’m double jointed too! But it’s really not an issue for me.

“That makes sense! Joint hypermobility is a spectrum: some people don’t have any symptoms or pain, some only have hypermobile hands or feet, and some people end up having problems throughout their whole body. It’s possible you just have joint hypermobility without symptoms. or a connective tissue disorder.” 

Have you tried xyz? (insert random health craze, yoga, juice cleanse, etc) “Unfortunately, that won’t fix the problem with my DNA. I get asked this question a lot, and can sometimes feel like this condition is my fault, even though it isn’t. I appreciate your support, listening to me, and wanting me to feel my best though! I know you have good intentions with your suggestions, but I am working closely with my healthcare team to make the best decisions for my health.”

This list of conversation starters isn’t exhaustive, and may not pertain to you, but we hope it helps formulate your own versions (even when you have brain fog). Below are resources to share with those who are interested to learn more about EDS.

Additional Resources

So maybe you’ve had some of these conversations and people in your life want to learn more! Below are some resources that can be used to educate friends, family, healthcare providers (and maybe even yourself).

In depth overview of EDS: https://anatomypubs.onlinelibrary.wiley.com/doi/full/10.1002/dvdy.220

Helpful tips for those caring for someone with EDS: https://www.ehlers-danlos.com/caring-for-someone-with-eds/

Multisystemic treatment approaches for symptomatic joint hypermobility(SJH): https://journals.lww.com/topicsinpainmanagement/citation/2023/04000/hope_for_hypermobility__part_2_an_integrative.1.aspx This resource can act as a guide for healthcare providers when treating SJH, and is also available to patients. It can be purchased for $47 and includes CME (continuing medical education) credits. This fee does not go to the authors. 

Additionally, you can follow Victoria Daylor on instagram @GeneticallyBendy and Cortney Gensemer on all social media platforms @CortDoesScience for more EDS related content.

More about our special guest: Victoria Daylor is a patient scientist with hEDS and is the Clinical Research Coordinator at the Norris Lab. She has a background as a professional contemporary dancer, and is now pursuing a career in medicine and research. Victoria uses her research and personal experience to share educational posts on Instagram about Ehlers-Danlos syndrome, joint hypermobility, and disability.