#789
Kari Dickerson
Participant

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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