Lupus Changed How I Saw Myself

By Deelausanboy2

1 min read

I was diagnosed with Lupus when I was 21.

Getting diagnosed with lupus

I had a grand mal seizure and thought it was epilepsy. I didn't know entirely how the disease affected the body until I had a flare-up. Every part of my body hurt like hell and the medication took weeks before a therapeutic level was reached. I got extremely depressed, and I shut down. I felt so bad about myself.

The aftermath

It changed the way I see life. It's been 26 years and I'm still dealing with the aftermath of my negative thinking. I didn't see it as a blessing and that's what made having it even worse, not seeing the positivity in the diagnosis.

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GabbyFormicaCommunity Admin
<inline-mention username="CommunityMemberb209df" user-id="6889929"/>, We hear you. It can be hard to make people who aren't living with lupus really understand. We are here to provide as a safe place for lupus warriors who can relate to connect and support each other. Let us know how we can best support you along your journey. Sending gentle hugs Gabby (team member)
CommunityMemberb209dfMember
Hello my name is Retanda Moorer and I was told that I have lupus back in 2007. My body hurts and plus I have these two butterflies on my cheeks and they burn can talk to my family or friends they think that I am crazy so I keep this all to myself
Ava MeenaMember
<inline-mention username="Deelausanboy2" user-id="4696030"/> You’re very welcome. I’m happy to clarify, and please forgive me if I misunderstood what you were saying. As I read some of the phrases you used: “I got extremely depressed… I felt so bad about myself.” “It's been 26 years and I'm still dealing with the aftermath of my negative thinking. I didn't see it as a blessing and that's what made having it even worse, not seeing the positivity in the diagnosis.” I interpreted some of that as a regret that you felt so bad about yourself and allowed your mind to have negative thinking. And that these feelings went on to affect your life over the next 26 years to the point that you wished you had handled it differently. Of course, I can’t speak for you and I don’t know exactly what you meant by those words – maybe they were just reflective. But I also want to say that I do regret many parts of my own reaction to my lupus diagnosis and the way I’ve allowed negative thinking to limit my life. I want to live the fullest life possible, even with my lupus, and my mind has held me back sometimes. There’s no judgement from me, only empathy. I hope that explanation is helpful. -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team
Deelausanboy2Member
<inline-mention username="Racquel H. Dozier" user-id="2041433"/> Thank you for commenting on my story. I receive those gentle hugs and kindness. I will ask God to help me go deeper because I've been running from this ever since my diagnosis and I'm tired of running. Thanks again.
Deelausanboy2Member
<inline-mention username="Ava Meena" user-id="2042408"/> Thank you for commenting on my story. May I ask what you meant by the comment "Sounds like you still feel guilty by my reaction to what happened"? I'm asking because I valued your input and would like to get a better understanding.