Jeannie Di Bon

I tweet about Ehlers-Danlos, hypermobility, dogs and flowers in that order.🦓💪🐶🌹

Foam rolling your tight spots? Here’s why I recommend you stop—especially if you have EDS or HSD, or chronic pain. 🔥 I did it myself in the past. It really hurt at the time. You may find foam rolling can feel good temporarily—but for people with connective tissue disorders, it…

Many of our members struggle with brain fog 🧠🌫️😶‍🌫️ In @jdibon's blog she describes "Symptoms that I would characterize as brain fog include struggling to find the right words, trouble concentrating, mental fatigue, and feeling a sense of what I called “jet lag”.

In one small study on patients with hEDS and hypermobility spectrum disorder (HSD), 36% reported experiencing brain fog often, while 33% reported it sometimes, another 20% said rarely, and only 10% said they never experienced it. It is so common in our community.

A diagnosis should never depend on appearance alone. Too many with hEDS or HSD are told they “look fine” while silently battling daily pain, fatigue, and dysfunction. Let’s advocate for care that listens—not looks.

Living with a connective tissue disorder means your body is constantly shifting—your needs, limits, and abilities can change daily. That’s why rigid routines don’t work for us. We need adaptive, flexible approaches—based on how we feel today. Consistency doesn’t mean doing…

You’re so bendy! Can you do the splits? Ever been asked that question 🙋‍♀️? Hypermobility is often mistaken for a fun talent—but for many of us, it’s linked to chronic pain, fatigue, and injury. It’s not just about joints—it’s about connective tissue throughout the whole body.…

If you’ve experienced fear of movement or exercise, first of all, you are not alone if you are experiencing this. In my 17 years, I've worked with thousands of people living with EDS and HSD, and this fear is something I see and hear all the time. Sadly, it is a cycle that…

I did a thing yesterday @cardiffuni 🎉🎉🎉🎉. Very proud to graduate with a Master of Science in Pain Management from the School of Medicine. My research - on EDS & HSD pain.

Have you ever been told you’re too sensitive? I grew up feeling like it was my fault that I was sensitive. It felt like my weakness versus others strength. But 1.Being aware of your body’s signals is strength, not weakness. 2.Noticing discomfort early helps prevent injury or…

If you’re like me and hold off taking migraine meds, here’s why we shouldn’t do that from Dr Katy Munro, migraine specialist. She spoke at our Zebra Club members meet up this week. “If you do get a migraine attack, get on it quickly. The trouble with waiting to see if it's a…

Some days it’s strength. Some days it’s rest. Both are valid. It’s unpredictable with chronic illness. I’ve found listening to what my body needs is the most important thing.

✨What does normal even feel like? When your baseline is daily pain, fatigue, and instability, it’s easy to forget that most people don’t feel like this.

Excited to catch up with the London Hypermobility Network next week at this event, plus a catch up with @BendyBrain 🙌.

EDS can be called called rare, but 🧐 It might not be as rare as we think—many people go undiagnosed for years. We still don’t know the actual prevalence of hEDS & HSD. We have estimates. Lack of awareness doesn’t mean lack of existence. Just because the doctors aren’t aware of…

We need to hear comments like this more often in our chronic illness community.

But you look fine… Why are you in a disabled parking space? Why do you need to use the lift? Why can’t you walk that far? Too many questions that we should not have to answer. We don’t need visible bruises or scans to prove your pain. Even if others don’t understand it, my…