Systemic Lupus Erythematosus

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    Based an actual event #Truestory

    I wrote this like 5 years ago, after I decided to ended my 6 years of a very complicated relationship. I do have a background as a substance abuser and so does my partner at that time. Both have a mentally issued, we both still married at that time (yes, it was an affair) but my justification is I already separated with my wife from 2010 and still we haven't divorce. At that time, I didn't know that I had several health issues, such as autoimmune (SLE), bipolar mood disorder, etc. And it made things worse, because my partner accused me using heroin again. The withdrawal symptoms of heroin kinda similar with my SLE symptoms. When she became angry, she was very abusive, physically and mentally. I've been stabbed from the back with her (literally), which punctured my right lung, so by the time I came to the hospital, my left lung was full of blood, I had to go under major surgery. And finally I came to the moment that "enough is enough". I had enough "drama" in my life, so I decided to left her. The interesting part is when we broke up, we actually move to the same city. We both used to live in Jakarta, Indonesia and then moved to Bali, Indonesia. We still bumped with each other several times but that's it. She already moved on and so did I. The difference is she has another partner now (she's still not divorce yet) but I choose not to have a relationship again. For my opinion, it will "drained" my energy. Thankfully, I enjoy my solitude. And I'm grateful right now. For me and for her.

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    Interview

    Hi everyone,

    I'm 22 and was diagnosed with SLE this past summer after dealing with Raynaud's, poor circulation, and fatigue (that I mistook as depression/laziness) that progressed for over a year. More recently, I've been dealing with long-lasting migraines, brain fog, and dizziness that's been affecting my ability to read/drive. Because I'm still figuring out how to deal with this on a daily (and because I'm a writer getting my MFA at Virginia Commonwealth University), I'm I'm interested in doing a creative nonfiction piece for publication centered around how people cope with their symptoms/treatments.

    I was wondering if anyone in this group would be open to chatting with me for about 30 minutes over Zoom to talk about their experience with lupus? Because SLE has significantly impacted my mental health, it would be great to speak with others who have that shared experience, but if you're mentally vibing and jiving and just want to talk physical symptoms, that's okay, too!

    If interested, you can respond to me here or email me at weissmanan@vcu.edu.

    Thank you,

    Allison

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    Just signed up for online therapy. First session Tuesday! Hoping to gain tools to cope better. Having a chronic illness is not easy and I freak out whenever I experience a new symptom. I have sle and had a recent flare that scared the shit out of me. This is going to keep happening if I don’t work on myself, so here is to a better me :)

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    I’m new here!

    Hi, my name is Jodi_jafo1231. Curious to know how many SLE folks are able to continue working fulltime? I was diagnosed last fall after several years of mystery issues :( I’m really struggling and wondering if I’m just lame or do others struggle? #Lupus

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    You don’t have to be the same person you were at 17

    I’ve been feeling very nostalgic for the person I used to be. The people I used to hang out with, my old friends, my old life- before the diagnosis’s, before my world was turned upside down.

    But the fact is that no matter how hard I wish to go back to that person 9 years ago, I will never be 17 again. I will never weigh 110 pounds again, and friends fade over time.

    The truth is that life moves on and we have to find a way to move on with it.

    9 years ago I was a 17-year-old, happy-go-lucky girl without a care in the world. I had the world at my finger tips. And then I had my first manic episode- I lost friends, family, scholarships to colleges. And then I was diagnosed with lupus- I lost the ability to walk- walk. I never thought, in all my life, I would lose the ability to walk. I gained over 60 pounds from meds, and my lack of movement, and yes, poor dietary habits. But I did learn to walk again (praise!).

    And I will never be 17 again.

    This is who I am now.

    I am 26 years old now. And I live with bipolar 1 disorder and lupus.

    I’m slowly but surely learning to live again. Learning to smile again. And learning to be the happy-go-lucky girl again.

    I believe in her. I believe in me.
    #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #weightgain #Lupus #SystemicLupusErythematosus

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    Me

    Hi. My name is Trisha. I would love to be a friend to you. I have had SLE for 14 years. I also suffer from depression, anxiety, fibromyalgia, Sjogrens and Raynards Syndrome. I am a mother of three children.

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    I'm new here!

    Hi, my name is dgn123. I'm here because
    I have SLE Lupus #MightyTogether

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    In My So Called Lupus Life

    Hi! My name is Rhonda and I am new here. I am a 52 year old punk rock poet and spoken word artist, working in homelessness, and have been diagnosed with Systemic Lupus since I was 16. I have been given 6 months to live many times. I am looking for an online support system to discuss the challenges of having such a torturing chronic illness. #Lupus #SystemicLupusErythematosus #ChronicIllness #punkrock #MightyPoets #Poetry #Homeless #homelessness

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    I'm new here!

    Hi, my name is Foxi74. I'm here because
    I am looking for something or someone to help me navigate through SLE (lupus) I was diagnosed this year and it's been pretty much hell on earth for me. I feel alone with this chronic disease, and I don't always know how to cope. #MightyTogether #Fibromyalgia #Migraine #Lupus #Anxiety

    1 reaction 6 comments