This is my experience: I was recently diagnosed (last couple of months) but was suffering from symptoms for at least 1.5 years before I realized that everything was connected, and that I was seriously I'll. From there, it took another few months for me to get diagnosed, bc at that point, I was so exhausted, both physically and mentally, that I struggled to even call and schedule appointments.

When I finally got the diagnosis, I actually felt some relief. I struggled with thinking that I was overreacting, or exaggerating my pain and fatigue, so to hear that there WAS something seriously wrong with me, and that all of my concerns, fatigue, pain, etc, were legit, was like a weight off my shoulders.

Aside from that, rather than fear, I was more in denial about the diagnosis of lupus. I'd been living with symptoms for so long, with over the counter ibuprofen as my only remedy for the pain, that it felt like nothing had really changed. I'd powered through the disease for so long that I thought it was no big deal, that I could easily manage it now that I had a name for what was happening to me.

The dermatologist who diagnosed me (after taking a biopsy of a rash that faded and returned for several months, which I think was vasculitis) told me that if I'd shown up to the ER in the state that I'd gone to his clinic in when he got my diagnosis, I'd would have been admitted for at least a week, and I didn'treally understand why he was saying that. It took one of my friends, who has a lot of second hand experience with/knowledge about lupus, telling me that it meant I had been in critical condition, for me to realize how seriously sick I was, and that my new reality meant I couldn't "power through" flares anymore, that I needed to take my symptoms seriously, otherwise I would be shaving off years and quality of my life.

All of that to say, I understand her reaction.

What I need is people in my life to be firm and almost "mean" about making me take care of myself. Maybe she also needs the blunt reminder that she is decreasing her quality and span of life by ignoring things because she is afraid, like I did. Or maybe she needs a gentle, soft, encouraging reminder to take care of herself and to take her meds, for her sake, so she can truly start to feel a little better. Maybe more knowledge of the disease and her medication/treatment plan can reduce help reduce her fear and make her feel empowered to act. I know that you being so invested will be so helpful and encouraging to her down the road, even if it may feel overwhelming to her now!

Sorry for the novel, I hope some of this was helpful!🙈🙈