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Accepting Your Diagnosis and Lupus

Posted on April 12, 2019



Accepting your lupus diagnosis can feel a lot like grieving a loss. It’s not the loss of a loved one, but the loss of your old life, or the life you imagined you’d have. “I feel like the old me died and is never coming back,” a MyLupusTeam member shared.


As with any major loss, you might find yourself on an emotional roller coaster. You may be anxious about your future, angry that you’re dealing with a chronic illness, depressed about your symptoms, struggling to believe your diagnosis, or even relieved to have an answer.

Your path toward acceptance may not be linear - there may be times when you feel like you can tackle anything lupus throws your way and other times where you feel hopeless. Whatever you’re feeling, you’re not alone. MyLupusTeam members have gone through it all.


From denial:

  • “I know I have lupus, but there's still a good part of my brain that is in denial.”

  • “I was in denial for a long time and didn’t take anything but anti-inflammatories until it got so bad I couldn’t hardly stay awake and function.”


Through fear and depression:

  • “First, there was the fear of being incapacitated for the rest of my life. Then the depression and anxiety set in.”

  • “I am so scared that I won't get a chance to raise my kids, or that I'll become a burden to them and my husband. The uncertainty is terrifying, and can almost be paralyzing.”

  • “It's hard for me to accept that this will be the rest of my life. I guess at the end of the day, I'm very scared of what is to come. I'm 21 years old. I just never expected this.”


To relief:

  • “At this point, all that matters to me is an answer, just so I don’t feel so crazy anymore!”

  • “At least now I have a diagnosis and not just told nothing is wrong or it’s just in my head.”


The path to accepting a lupus diagnosis is different for everyone, but the common thread for members on MyLupusTeam is the importance of talking about their feelings.


“I definitely recommend therapy,” one member wrote. “Counseling has helped me and my family deal with all the things that come with a chronic illness.”


“I love all of you on this site because I find this is the one place I can speak my mind and say how I really feel,” a member commented. “So glad I found you all.”


On MyLupusTeam, the social network and online support group for those living with Lupus, members talk about a range of personal experiences and struggles. Accepting your diagnosis is one of the most discussed topics.


Here are some question-and-answer threads about accepting your diagnosis:


Here are some conversations about accepting your diagnosis:


How did you feel when you were first diagnosed? How have your feelings changed over time? Share your experiences in the comments below or directly on MyLupusTeam.

A MyLupusTeam Member said:

I have very severe lupus + Sleroderma + several other autoimmune diseases. That is extremely hard to accept and deal with, because I have organs involved. 4 diff. Meds that keep my immune system… read more

posted 2 months ago

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