Living with Ehlers-Danlos Syndrome Type IV and More

Hi! I also always struggle with the fear of a medical thing happening to me after having heart failure / spontaneous anaphylaxis so I totally get the feeling. Not that it’s easy to turn off, but the saying “If you worry about a bad thing happening, you suffer twice” helped me. Because even if something does happen eventually, you’re already in the painful crisis of fearing. So just trying to let that go and save the worry for when the situation actually happens. And in actual crisis moments, somehow, I get so overwhelmed that I turn my brain off and stay super calm. Just know that if something happens, there are experts medically equipped to get you right back on your feet. 💕

Hey! I’m pretty new to this app as well. I primarily was looking to connect with EDS ppl (I have hEDS) and potentially people who could relate to the mental health stuff I’ve been through. Doing all the logistical work to keep up with doctors appts and make calls and all that is rough! Happy to be an accountability buddy or just chat if you want to reach out directly :) — I think if you click ‘message’ below a comment you can do that? Or from a users profile? Not totally sure yet…

Ooh! But my ADHD did not read all the way through your post the first time and I also have that and autism ❤️

Hi! Welcome to the group! 💕 So glad you are here. There is a way to click around & find specific conversations related to the illness that you are most concerned about. 🤗 Also, I have found that the “Curable” app has been very helpful & makes me feel supported for issues with anxiety & chronic pain. The “Calm” app also helps with anxiety & depression - helps me feel supported & center, calm, & soothe my racing or sad thoughts. Therapy with a well-trained therapist (who you also enjoy as a person!) is sooo helpful, too! There are therapists who specialize in helping people process their new medical diagnoses. (Even a therapist who specializes in grief, anxiety, & depression could probably help!)

I have a different kind of EDS, but because of personal complications I don’t know that I will live past abt 50 either. Instead of being sad or “fighting” this illness I have reframed it as growing a garden. It sounds much prettier and makes it easier for me to be in the moment and make lots of memories. It’s probably not what you are looking for, but it’s all I’ve got. ❤️

And I just figured out the direct message option too. If you click on someone’s username, the direct message option is very close too, if not the first option that pops up ❤️

Hi!! I’m lvflute! I’m a college student in the USA. I do not suffer from the same illness you have, but I came here for my multiple mental disorders as well as migraines and PCOS. I may not be able to help much, but I’d be down to talk about anything ☺️