Tell us about your symptoms and treatment experience. Take our survey here.

caret icon Back to all discussions

TED Returning

For those in the Inactive Stage: Do you ever worry about your TED returning to the active stage? How do you deal with those worries?

  1. I very much worry about my eyes returning to an active phase of TED. I use it to push me to do more, experience more, see more. During the active phase I wondered if it was the “new normal” and now that I am in an inactive phase, I want to take full advantage of my eyesight.

    1. Yes. Just had surgery in right eye and sometimes when im tired i start seeing double again and panic but after i rest it gets better thank god. I think id rather die than go through it again.

      1. , I hear how alarming it feels and the feelings it must trigger. You are not alone in those worries and we are here to offer any support we can on those days when the panic sets in! Best, Sam S. (TED Team).

    2. I literally just had my surgery on Friday and all I’ve been doing since is worrying it’s going to come back with a vengeance. I’ve been seeing a therapist for a few months to deal with issues around TED… she’s been helpful with other issues and hopeful talking it out may help. If you can, maybe that’s something to explore? Thinking of you. Thanks for sharing your worries… you’re not alone 💗

      1. Thank you so much for sharing with us and being so supportive. How are you feeling today? Sending you positive vibes! -Beth (Team Member)

    Please read our rules before posting.