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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Ava Meena Moderator & Contributor
<inline-mention username="Deelausanboy2" user-id="4696030"/> it sounds like you still feel guilty about your reaction to what happened to you - but it's not your fault and you don't have to hold onto that guilt. I know what going through severe pain for a long time is like and it seems (to me) like it's almost impossible not to feel depressed and negative when you seem to only exist in a painful body. I encourage you to consider therapy to work through these feelings. But know that you're not alone. I have gone down dark holes since my diagnosis and dealing with various symptoms and problems from lupus. Sometimes I need help to get out of those holes, and the medications can take a long time to fully kick in. I still struggle to think positively when my body hurts and limits me. It's normal to feel that way, but things can get better. Don't be afraid to reach out. Thank you for sharing your story. -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team
1. Deelausanboy2 Member
 <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.
2. Ava Meena Moderator & Contributor
 <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
Racquel H. Dozier Moderator & Contributor
<inline-mention username="Deelausanboy2" user-id="4696030"/> it can all be so hard to deal with. We definitely change and have to adapt to the new us on this journey. Sometimes we will focus on the positive and other times we will have to deal with the negative it brings. It’s okay to release those feelings of pain and sorrow for having lupus. You deserve that release and need it in order to come to a sense of acceptance. I am sending you gentle hugs and holding space for your self understanding . Thanks for sharing we are always here to support you on this difficult journey. ~Racquel ~ lupus team member 
1. Deelausanboy2 Member
 <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.
CommunityMemberb209df Member
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 
1. GabbyFormica Community 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)