Isabelle’s Path with Ehlers-Danlos Syndrome!

Hi! My name is Isabelle Lee. I’m seventeen years old and I love jazz music and cats. Above is a photo of my cat, Peanut. I live my life with Ehlers-Danlos Syndrome. Here’s a look into my life.

---

Question: If you were not born with your condition what do you miss the most from before you had it? What do you grieve from prior? What's one thing you were able to do before that you are unable to do now?

Isabelle’s Answer: I was born with Ehlers-Danlos Syndrome, so my life coinciding with an invisible disability is my normal. There aren’t activities that I miss necessarily as I’ve never tried them, but there are certainly several things that I do miss out on. Having a connective tissues disorder affects my entire body. It prevents me from participating in many sports and physically intensive activities. This often resulted in feeling left out or isolated from my peers when I was younger. Pro tip: find other stuff you love! It’s much easier with a support group of friends in something you enjoy. 

Question: What are the main symptoms that you experience?

Isabelle’s Answer: Ehlers-Danlos affects all of my connective tissue, this results in a constellation of symptoms across my body. Some of the most prominent ones include fatigue, brain fog, abdominal pain, headaches, joint pain, and frequent dislocations/muscle spasms from accommodations that I have to do in order to function properly.

Question: How does your condition affect your daily life and school?

Isabelle’s Answer: I live with minor to moderate pain. It’s just something that’s constantly lingering in the back of my head. I am always aware of it and looking out for pain management. It takes up a moderate portion of my brain power as I am constantly thinking about it. Having to be my own doctor and continually monitor myself and my body is not easy. The mental logistics of figuring out just how much medicine to take that it dims my pain but not my ability to be present. Both stress and medication take a toll on my ability to learn properly. 

Question: What are the toughest parts about living with this condition? Be as specific as possible!

Isabelle’s Answer: One of the toughest aspects is the constant fatigue from always having to accommodate my needs. This isn’t just about the mental energy required to adapt—it also includes the involuntary responses my body goes through just to function. My body is constantly working harder than it should, even for the simplest tasks, which leaves me feeling drained both physically and mentally. It’s an unrelenting cycle that can feel overwhelming at times. However, it’s definitely made me stronger as a person, and it gets so much easier after a year or two. 

Question: What tips or strategies have helped you manage your condition?

Isabelle’s Answer: One of the strategies that’s really helped is practicing self-reward. You should try it too! Whenever I do something hard or challenging for me, I make it a point to treat myself—it’s a simple way to stay motivated and acknowledge my efforts. Taking time for self-care is also crucial, whether it’s rest, relaxation, or doing something I enjoy. Interestingly, oregano oil pills have also been surprisingly effective for me—they’ve made a noticeable difference in managing my symptoms. 

Question:  What’s one thing you wish people understood about living with a chronic condition?

Isabelle’s Answer: I wish people understood that living with a chronic condition impacts nearly every aspect of our lives, from the way we plan our days to how we interact with others and even how we perceive ourselves. It’s not just about managing symptoms—it’s about adapting constantly to a body that doesn’t always cooperate. This isn’t an excuse for anything, but it does influence our behaviors, energy levels, and what we can realistically handle at any given time.

At the same time, I wish people wouldn’t assume that we’re fragile or incapable. While we appreciate support and understanding, it’s also important to recognize that we’re stronger and more resilient than we might appear. Treating us like we’re made of glass can feel isolating and patronizing. Instead, acknowledging both our challenges and our perseverance goes a long way in creating genuine connections. Thanks for listening :)

---

You are never alone in how you feel! Join our community today!