Honesty, Not Negativity: Why I Share My Medical Experiences

When I share my experiences of living with Classical Ehlers-Danlos Syndrome (cEDS), particularly the challenges I face in medical settings, I sometimes hesitate. I worry—will people think I’m being negative? Will they think I’m just complaining? But I know that if I stay silent, nothing will change—not for me, and not for the countless others facing similar struggles.

The truth is, I don’t share these stories to dwell on the bad. I share them because they are real, and because they matter.

The Difference Between Negativity and Honesty

There’s a huge difference between being negative and being honest. Talking about difficult or painful experiences doesn’t mean I have a negative outlook on life—it means I’m raising awareness, advocating for better care, and giving a voice to issues that are too often ignored.

People who haven’t experienced medical neglect, dismissal, or ignorance might find it uncomfortable to hear about these things. They might think, “Surely that doesn’t happen,” or, “It can’t be that bad.” But for those of us with rare or complex conditions, these experiences are far too common.

I don’t share these stories to blame all medical professionals or to paint the healthcare system in a bad light. There are many amazing, compassionate, and knowledgeable doctors and nurses out there—I’ve been lucky to meet some of them. But that doesn’t erase the bad experiences, and it doesn’t mean we shouldn’t talk about them. Because every time a patient is ignored, dismissed, or mistreated, it matters.

Why I Speak Up

So why do I keep sharing my experiences? Because I know I’m not the only one who has been through them. And I want to make sure that:

✔️ People with cEDS (or other chronic conditions) know they’re not alone.

✔️ Others can learn from my experiences and be better prepared to advocate for themselves.

✔️ Medical professionals can gain insight into the realities of what patients like me face.

✔️ The next person in my position doesn’t have to go through what I did.

It’s not just about me—it’s about all of us who have been unheard, dismissed, or harmed in medical settings. If sharing my story means that even one person is better prepared to speak up for themselves, then it’s worth it.

A Recent Experience: My Podiatry Appointment

At a recent podiatry appointment, my concerns about fragile skin and excessive bleeding were ignored—until the podiatrist cut my toe, causing significant pain and bleeding. Only then did she acknowledge the risks I had warned her about.

This is exactly why raising awareness matters. This appointment should have been routine and straightforward, but instead, I left in pain that could have easily been avoided.

The Lasting Impact of Being Ignored

The soreness and discomfort lasted for days, but the emotional impact lasted even longer. I was left feeling:

❌ Unheard. I had clearly communicated my medical needs, and they ignored me.

❌ Dismissed. My pain wasn’t taken seriously, even though it could have easily been prevented.

❌ Frustrated. This was supposed to be a routine appointment, yet I left in more pain than I started with.

This wasn’t just about getting my nails cut. It was about how medical professionals treat patients like me—people with rare conditions, people who need a little extra care, people who have to fight to be believed.

And that’s exactly why I share these experiences.

Speaking Up for Change

It would be easy to stay silent. To let these experiences fade into the background. But if no one talks about these issues, nothing will change.

I share these stories because I want things to be better—for me, for others with cEDS, and for anyone who has ever been dismissed by a medical professional.

✅ I want doctors and nurses to listen, to take patients seriously, and to be aware of how different conditions require different care.

✅ I want other people with EDS to know that they’re not alone and that they have every right to advocate for themselves.

✅ I want patients to feel empowered to speak up when something isn’t right.

This is not negativity. This is truth. This is advocacy. This is making a difference.

So if you ever feel like your experiences are being dismissed, or if you’ve been made to feel like you’re “complaining too much,” please remember this:

Your voice matters. Your pain is real. Your story could help someone else find the courage to fight for the care they deserve.

And if sharing my truth makes even one person feel more prepared, more confident, or more understood, then it’s absolutely worth it.

I won’t stop sharing my truth. I won’t stop pushing for better awareness, better care, and better understanding—because we deserve to be heard.

This is not negativity. This is reality. And reality deserves to be acknowledged. 🖤