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    • #697

        Tell us about your diagnosis and how you explain it to your friends and family.

      • #668

          I dread telling anyone close to me, it’s exhausting, I have a hard time navigating the conversation . I feel like I have to gauge how they feel and make them feel better.

        • #729
          melanie gornick

            Hi Lizzie-
            I waited about 3 months. It was quite apparent that there was something wrong (that I couldn’t hide) but waited to tell them exactly what until I understood it myself. My kids are all older, I have only one left in HS. If I had younger kids I don’t know how I would have handled it.
            Anyone reading this post who have younger kids please offer your feedback, I know this question isn’t unique to Lizzie.

          • #789
            Kari Dickerson

              I don’t have kids or husband, so maybe that makes it easier? I have been telling friends and family members (the ones I am close to) slowly. I tell them it is an autoimmune condition that tells the cells that produce collagen (scar tissue) to produce too much, resulting in hardening of skin, as well as cells of blood vessels, etc. I very briefly mention the risk of organ involvement and what might develop with the skin (I don’t have skin issues yet), but I focus on what I need now, not how bad it might get. I am in the middle of dealing with the tests, doctors’ visits and trying to do my work while distracted, fatigued and losing time to drive for the appointments. So what I need is support and encouragement. I also have a couple of work friends (we all work remotely) I have given permission to talk about me so if they notice something concerning that I am ignoring they can confirm then address it with me. I decided I would rather those close to me, work or personal, hear from me now when it isn’t as hard or exhausting to discuss as down the road when I am feeling worse or dealing with more challenges. Not sure this is the right approach for everyone but it is working for me so far.

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