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maple_oldfashioned

816d

Hi, everyone! I was anticipating a one-on-one discussion, and I'm not sure how this works yet. Possibly the twenty people who recieve this will do so indivually, but I think at this point it's more of a 20-person round table discussion. A bit about me: I named myself after my favorite kind of donut. I'm unsure if my diagnoses are visible to you. I probably should have stated to the app that I primarily came for support as I deal with a diagnosis of Ehlers-Danlos Syndrome Type IV, or vascular EDS, which is severe and has a median lifespan of around 50. I am 27, the average age at which one experiences their first major 'event' (such as aortic dissection, aortic abdominal aneurism, spontaneous organ rupture or collapsed lung, etc). I'm incredibly anxious about it and probably wouldn't be able to function without my antidepressants. However, large parts of my experience also deal with being autistic and having adhd, along with several other conditions, and I would really appreciate being able to factor those parts of myself into our conversations as well. I know I need help with self-advocacy and actually making the calls I need to make. Maybe we can help eachother. What about you folks? What brought you here, and how are you doing right now?

Top reply
    • Bijoux_bean22

      816d

      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. ❤️

    • marisa

      816d

      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. 💕

    • Danika

      816d

      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…

    • lvflute

      816d

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

    • Lyndi

      816d

      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!)

    • Bijoux_bean22

      816d

      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. ❤️

    • lvflute

      816d

      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 ❤️

    • lvflute

      816d

      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 ☺️

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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